# Can you have IBD without weight loss?



## Momto2girls (Nov 27, 2012)

So, I've been trying to stress less about Gracie's symptoms. She's still not at her "worst" -- the Sulfasalazine helped that a lot. She's still not great -- she's somewhere in the middle. She's constipated though she is going every day. (A small amount of tiny little pooplets). I haven't seen any blood for a couple of weeks. She doubles over in her chair after just about every meal -- so as to put pressure on her tummy (or relieve pressure somehow?), but she is eating. She's been more tired lately, but not alarmingly so.

She's not losing weight, though. I mean, I don't think she's gained any weight in at least a year -- but her weight was a bit high at that time. But she also hasn't grown in at least 6 months -- maybe longer? I need to check the records.

So, could inflammation/damage be festering without weight loss? Or without weight loss I can assume things aren't awful and it is OK to coast along?


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## Farmwife (Nov 27, 2012)

Grace does lose weight but she didn't for awhile. Even now she's still thick. Not to skinny.
Her growth was slowed until we started EN. 1-3 shakes a day with meals or as a snack. It helped her put on a little weight but we noticed her growth took off for the first time in her little life. I don't know if that help but I know others will be along to answer your questions.


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## Momto2girls (Nov 27, 2012)

That does help, thanks! I was just reading up on your Grace. Still no scope, huh? I am sorry, that's frustrating!

I do think it is concerning Gracie hasn't grown in height at all. She's still far from "falling off the charts" so I don't think the doctors are concerned.


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## crohnsinct (Nov 27, 2012)

I am glad you asked.  I am casually watching my youngest and wondering the same thing.  She has precoscious puberty so is off the charts tall and weighs just as much as her 13 year old sister with IBD.  She also has Vitaligo (another auto immune issue). We are watching her because she has constant stomach aches and has recently added occasional miscellaneous vomitting to her repertoire...oh yeah and some constipation.  Like you say I am not alarmed but was wondering.


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## kimmidwife (Nov 27, 2012)

Lauren,
I would be concerned about the lack of growth in a child that age. Does she have crohns or UC? Sulfalazalin by itself is usually not enough to induce remission in crohns in most people. How are her labs? When is the last time she had labs done? WHen was her last scope?


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## Patricia56 (Nov 27, 2012)

My son had NO weight loss. In fact his BMI was so high it had the GI staff whispering in the hallways and I overheard a couple of people saying "he has crohns?"

He did however have 3 years of growth failure in terms of height. He grew out but not up I guess you could say.

He also did not present with diarrhea. He had constipation instead.


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## Momto2girls (Nov 27, 2012)

Kimmidwife: She doesn't have a dx. Her labs have always been fine -- her latest showed high platelets, but with her other inflammatory markers normal they weren't concerned. We've never done a fecal calpretectin, but I do have a call in about that.

Her only scope was done in April -- it showed inflammation in the ileum and colon, but no damage or granulomas. So they did start sulfasalazine, but say it isn't Crohn's. We have a loaded family history of IBD. The scope also showed H. Pylori in her stomach which they aren't treating b/c she doesn't have ulcers.

She does have severe food allergies, seasonal allergies, and eczema. So she's obviously got some immune disorders. All Celiac tests have been negative.


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## Momto2girls (Nov 27, 2012)

Patricia -- that sounds JUST like her. If I am remembering right she was like 80th percentile at age 3 for weight, and maybe 60th percentile for height. At age 4 yrs, 8 mos, she is 50th percentile for weight and 35th percentile for height (or thereabouts). And yes, she has constipation unless she's got an impaction which causes diarrhea -- and that has happened many times.


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## Sascot (Nov 27, 2012)

My son has never had weight loss or any issues with blood tests.  In fact I used the Modulen liquid diet to help him lose a few pounds :biggrin:.  The faecal calprotectin was the only test which ever showed anything up!


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## xmdmom (Nov 27, 2012)

Momto2girls: What did the doctor think caused the inflammation in the ileum?
From what I understand, granulomas are often not found on biopsy in Crohn's.


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## Momto2girls (Nov 27, 2012)

Sascot -- wow -- that does sound like her, too. I am calling her GP about a fecal calprotectin -- since the GI seems unconcerned. 

xmdmom -- All they will say is "unknown origin"?? Possibly an infection although we did blood work AND stool samples and there was NO infection. All the said was without damage there is no Crohn's? 

She does have blood off and on. For a while I stopped checking her stools every time she went. It was making me crazy.


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## Crohn's Mom (Nov 27, 2012)

This last month + is the first time Gab has ever had an issue with weight loss since her (official) diagnosis; 3 years ago.  
However, I will say, she was classified when she was much younger as "failure to thrive".  It wasn't due to weight loss ~ she just didn't gain weight, or grow much.

I sure hope you get some answers for Gracie soon ! 
Breaks my heart to think about all these undiagnosed kiddos 

:hug:


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## my little penguin (Nov 27, 2012)

DS also has severe food allergies, asthma and ezcema along with his Ibd.
The main reason we first went to Gi was lack of weight gain for two years which then proceeded to slow weight loss.
He also stopped growing shortly there after.
He has the most normal blood work of anyone.
Constipation instead of diarrhea .
Joint pain etc....
Once we found the right drug all is well in our world


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## AZMOM (Nov 27, 2012)

I know you know ALL kids are different.  But with Claire she was having massive blood loss - literally pouring out and still not losing weight.  

So the weight loss is one piece of the picture.  It's good that the weight is stable!!!  Just keep watching for trends........

Big hug!

J.


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## muppet (Nov 28, 2012)

You can certainly have IBD without weight loss. I'm 255 lbs right now and can't lose weight to save my life. I still blame annual prednisone courses.


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## Momto2girls (Nov 28, 2012)

Then why oh why oh why do doctors only look at kids who have D and are losing weight!?!?!?!? Did they not get the memo from all of these moms!?

ACK! And why would it be that the GI docs at Children's Mercy Hospital in Kansas City (v. good hospital, maybe not so great for GI) are NOT doing fecal calprotectin???? I am calling today about it but I don't understand??


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## muppet (Nov 28, 2012)

Children's Mercy Hospital is great for certain things. I harrassed a poor neurologist there for weeks when my daughter Izzy was having developmental difficulties that specialists here wouldn't/couldn't explain... he had an amazing rep (also no time for hysterical parents  )

Not so sure about GI stuff there, though. Weight loss is definitely not REQUIRED for an IBD diagnosis.


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## Momto2girls (Nov 28, 2012)

Agreed. Children's Mercy isn't great for everything and I have to say in my opinion GI is their worst. We went through Neurology there, too. Dr. Facini -- or something like that -- kinda strange, but got the job done I guess? Is your daughter OK now? Did you used to live here?

I am thinking I might need to switch docs again -- we'll see. We've been through 2 GIs so far -- what's a third!?


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## muppet (Nov 28, 2012)

I was born in Kansas but only lived there until I was 2 so I don't remember. 

No, I got Dr. Steven Shapiro's name from a support group similar to this one, but for Kernicterus and Auditory Neuropathy (both of which Izzy seems not to have.) Technically her diagnosis is "Autism", but for several reasons I don't buy it. She's actually doing much, MUCH better at 3 years old and you can barely tell there's anything wrong.

Only 2 GIs so far? Piker! ;-) 

Seriously though, you should definitely keep swapping until you're comfortable. University hospitals are usually the way to go. I'm not sure what's in your area, though. Sometimes switching docs within the same practice pays off, but in my experience switching practices entirely is usually the most effective. Hang in there, it can get frustrating, but battling and switching is better than receiving mediocre care that makes you uneasy.


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## Momto2girls (Nov 28, 2012)

So CMH is the only ped GI practice in town. Lovely, huh? We do have KU Med (Univ of Kansas Medical Ctr) here and there is ONE ped GI there. Maybe he's worth a try!? I guess I've nothing to lose, right?


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## muppet (Nov 28, 2012)

I'd say it's worth a shot. What a bummer that the choices are so sparse in your area. We're lucky enough to live between two major cities and there's quite a selection compared to what you've got. 

We do commute 3 hours to see Sarah's GI, though. Our in-state selection was pretty miserable, in my opinion.


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## Momto2girls (Nov 28, 2012)

So glad to hear you (possibly) Autistic child is doing so much better at only 3! That's wonderful. 

The only thing 3 hours from here is Branson! Ha! Or Omaha?


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## muppet (Nov 28, 2012)

Yeah it's a bit different out there where you can see all that sky... :-/

That other doc is worth a shot. I've been telling my wife that we should move someplace with universal healthcare for years. Haven't worn her down yet. Boston Children's has been our hero for awhile now.


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## Patricia56 (Nov 28, 2012)

Actually the guy (Hyman right?) at UK has a very strong reputation at least in the area of treating motility issues, particularly constipation.


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## Suzysu (Nov 29, 2012)

WOW! Our GI's literally will not take a child seriously unless they are loosing weight - or else they are just not interested! - I am amazed at just how many kids there are with crohns that didn't or haven't lost weight. Freddy is on the 25th centile for weight and has periods of many months where he doesnt gain any but doesnt loose either. he is just on the 9th centile for height - I got really excited the other day when it looked like he may have been growing out of a pair of trousers - then I checked the label (1-1.5years!) - he is 2 and a half now and many of his 1.5-2year old clothes still look too big for him!! - but the GIs just keep saying he is fine for weight and height - despite my other children being quite tall for their ages.
I do vaguely remember reading somewhere that it is often the height rather than weight that can be affected in kids with crohns - but I could be wrong about that.
I hope you get some answers soon mumto2girls xxxx


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## Sascot (Nov 29, 2012)

Glad I'm reasonably happy with our GI, it is extremely difficult to change here as it is really frowned upon.  I remember trying a different kids hospital A&E a few years ago and although they saw her that once, they were very quick to tell me that they don't deal with "my area" and we should have gone to the usual one (who had sent her home from A&E 3 times :ybatty


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## Momto2girls (Nov 29, 2012)

So, I got the actual records, and it seems in 9 months she has grown a 1/2 inch! So it is something, right!? I've read the average is 2-3 inches between age 4-5, but I'm sure not every kid grows that much.  And she has actually gain a pound (depending on what day you weigh her!) 

So maybe I don't need to worry so much? She does have a bit of blood today but nothing awful.

I called about the fecal calprotectin and would you believe the nurse said it is very RARELY ordered by any of the docs?? She said maybe once or twice in 5 years? She was going to ask the doc why and if he'd order it and I'll let you all know what they say. I'll be curious to hear, of course.

So, that's all I know. I am really quite excited her growth hasn't stopped completely!!


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## muppet (Nov 29, 2012)

Growth is good, but I'd want the doctor to comment on whether it's ENOUGH growth. That's not to say it isn't. I don't know, and that's why I'd press the doc. 

You might ask whether a consult with a developmental pediatrician could be beneficial, as well, regarding whether she's thriving like she should be.


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## Patricia56 (Nov 29, 2012)

I don't know all there is to know about growth. But I know a lot.

You need to start by charting her growth since age 2 on the standard CDC growth chart for girls you will find here:

http://www.cdc.gov/growthcharts/data/set2clinical/cj41c072.pdf

It is not enough to look at her growth over a 9 month span. Little kids grow in spurts (I know you know this) and those spurts usually happen in the spring and summer. Not always but usually.

It's better to look at the pattern of her growth over the past 2+ years - or to see if there is a pattern. Typically over that time there should have been uneven but steadily upward growth that roughly follows the growth curve shown on the growth chart.

If her growth is significantly different than that curve then you may have meaningful information to bring to the table.

However, if you are relying on measurements you took at home, those may be dismissed as inaccurate. Unfortunately, the pediatrician's office's measurements are often inaccurate TOO. If you feel confident that one of her docs has accurate measurements, call and get the information from them. Otherwise I would compare numbers when you have them and pick the one you think is the most accurate if there's a discrepancy.

And from now on, whenever she visits any doctor, ask that they check her height and weight. You will need to be the one to make sure the way it is done is consistent from one place to the next. Shoes off, stand tall, etc. And if the aide is sloppy about taking the measurement, make them do it again. If the number is way off from what it should be - as in shorter by an inch - ignore that measurement and if you are feeling kindly you might inform them that they need to calibrate the measurement device.

And you keep track of the information, preferably to put into a spreadsheet of your own.


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## Momto2girls (Nov 29, 2012)

Thanks so much for this! OK I printed it and I put on it what I have -- which isn't much!! (I only go back to age 3 and honestly I do not know how accurate it is? They are from the doctor, though.) I am working on getting some older charts.

Weight is climbing but just barely -- it isn't on the same curve it started at but it barely still increasing. In almost 2 years she's up 6 pounds (on a good day). 

Height stayed on course from 3-4 -- with nice growth on the curve -- from 4 to now she's off the curve a bit. 

I think it is probably just too soon to tell. I will try to get her 2 year information, but I am guessing the slower growth is just too new to show a real pattern.


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## jmckinley (Nov 29, 2012)

Yes! It's not just about losing, but kids are supposed to be growing. If you aren't seeing any growth, you should be concerned. 

It sounds like you are where we have been. Ryan didn't lose alot, but stayed the same for a year! We were just in limbo. We were so concerned because these are supposed to be growing and developing years. If their bodies aren't growing, their minds aren't doing much better. It's asking a lot, but it's not enough to me to be surviving wigh IBD. I want Ryan to thrive in spite of it!

Are you doing the Miralax for the constipation. When Ryan was in this state, we used it once daily to keep things moving.


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## Patricia56 (Nov 30, 2012)

If your doctor gave you a pamphlet at the 3 year well child visit that is likely to have height/weight measurements.

If you have any numbers from infancy chart them on this graph:

http://www.cdc.gov/growthcharts/data/set2clinical/cj41c068.pdf

If any of these links don't work here's the link to the main page of graphs. You want the set that is 3% to 97% - 

http://www.cdc.gov/growthcharts/clinical_charts.htm#Set2

If you have that info it may help you tell if her slow weight gain has been typical or if it's a change. However the growth patterns of infants is different from that of young children which is why they change growth charts. So you can't make direct connections between the two.

And you're right, 9 months is a short time for deciding she's got growth delay/failure. But if she's also not gaining weight then to my mind that adds weight (no pun intended) to the height numbers, particularly since those 9 months included the entire spring and summer.

Try asking your doctor's office for the information. They may have it where they can just print it out for you.


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## Momto2girls (Dec 1, 2012)

So, the GI called last night. He basically said that the only thing the feacal calprotectin is good for is to tell if there is inflammation -- but it doesn't tell what kind of inflammation, and it doesn't tell how severe. Also, he said it has false negatives. So he won't order it. He said we already know from her first scope that she had inflammation -- and it was non-specific. So they would have to scope in order to find out what type of inflammation she has now. 

He basically said all we can do next is scope again. And I do not want to scope again!! 

This is crazy!!


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## my little penguin (Dec 1, 2012)

Ok let me get this straight...
They scoped and found evidence of inflammation in her TI ( chronic or acute)?
She has stomach pain but because they didn't find a granulomas they are not calling it crohn's or treating it at all???
How do they plan on getting down the inflammation in her Gi tract then if they don't treat it.??
Also fecal caloprotectin is specific for inflammation in the gut so it would tell you if she was still inflamed in the gut.
Have they done an MRE to see how much damage the unchecked inflammation is doing?
By definition crohn's is and inflamed gut- Ibs there is not evidence of inflammation.
If the doc thinks the inflammation is caused by something else did he say what that was and how he plans to treat it since inflammation can not be left to fester on its own.
I have said this before but send her records to cchmc given she has more than just FA going on .
They can at least give a record review even without you traveling there.
I feel so bad for you and her.


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## Sascot (Dec 1, 2012)

Wish there was an easy answer!  Hope you get it sorted soon!


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## DustyKat (Dec 2, 2012)

It surely is frustrating when doctors don't think outside the square. :voodoo: 

My two didn't have overt weight loss until they were very ill and neither had diarrhoea. It is these two things that are my pet hate about the CDAI, far too much emphasis on them in the scoring. 

As Crohn's Mom has said, it isn't always about loss but rather lack of gain or failure to thrive (FTT). And as Patricia has said consistency is the key. I found with my two I took them to the GP for weight and height...same equipment, same doctor and same method of taking the measurements every time. 

Dusty. xxx


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## izzi'smom (Dec 2, 2012)

Just chiming in that we had no weight loss for a while after diagnosis either. Izz was in the 95th percentile for height and weight until about a year after diagnosis.


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## Catherine (Dec 2, 2012)

Sarah weightloss occurred in last couple prior to dx but gi believe she had imflammation for  up 3 years prior to dx.


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## Patricia56 (Dec 2, 2012)

The PCDAI is a research tool. It is not designed to be nor should it be used as a clinical assessment tool.

It is only a way of trying to make sure that different researchers are using the same criteria across different clinical trials. That way you should (in a perfect world) be able to make comparisons of results between trials based on PCDAI results.

If all the patients entering an intervention trial start with a given PCDAI then at the end you measure the PCDAI of all the trial participants as one measure of effectiveness. This allows you to make assertions about the relative effectiveness of that intervention when compared to another trial of a different intervention that also used PCDAI to measure effectiveness.

For example, Trial 101 started with PCDAI of 150 and the final average PCDAI was 75. Trial 258 started with PCDAI of 150 and the final average PCDAI was 25. Assuming other characteristics of the participants (like age and diagnosis) were the same you could then say that the intervention in Trial 258 appeared to be more effective and then apply statistical tests to make sure this apparent result was statistically significant.


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## Catherine (Dec 3, 2012)

Patricia, I hate CDAI because in Australia you need a score of concern number to get accress to some medications.

My daughter appears to be failing aza but does qualify for remicade due her score.


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## Patricia56 (Dec 3, 2012)

CDAI is NOT designed to be used as a clinical tool and that is soooo completely wrong for it to be used that way. It is simply a way of making it easy to compare cases on the basis of an *arbitrary* and not necessarily clinically-relevant group of characteristics.

It should never replace clinical judgment.

NEVER.

Grrrrrrrrrrrrrrrrrrrrr.

:voodoo::voodoo::voodoo::voodoo::voodoo:


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## izzi'smom (Dec 3, 2012)

Not in love with CDAI either...it excludes us from stem cell transplant studies, as dd has never been sick enough on the scale despite losing 13 pounds (at age 4), bleeding, 20 bathroom trips a day, and sleeping 15 hours a day. ARGH! I think IBD is so different for every patient it is fairly difficult to judge them all on the same scale. :/


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## my little penguin (Dec 3, 2012)

I am with you Angie. Since DS primary symptom is C not D our score tends to be really low.


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## Momto2girls (Dec 11, 2012)

my little penguin said:


> Ok let me get this straight...
> They scoped and found evidence of inflammation in her TI ( chronic or acute)?
> She has stomach pain but because they didn't find a granulomas they are not calling it crohn's or treating it at all???
> How do they plan on getting down the inflammation in her Gi tract then if they don't treat it.??
> ...


Yes, this is correct. They said the inflammation was "unspecific" and all they will say is they don't know what caused it?? But then he'll say she has "functional gut." (Basically IBS) so it is GAH!! They haven't/won't do an MRI -- they haven't/won't do feacal calprotectin. They will only scope again at this point. 

I know, I should just send the records. But, I think I might first try this ONE other ped GI here in town who is not with the same practice. I don't know.

She's been up the past couple of nights -- which is a sign things are getting worse. This morning she only had the tiniest bit of blood, but a larger amount of mucus. What does that mean? Tonight she had a bit of D -- maybe be getting blocked again. I am noticing increased extreme thirst (she's always really thirsty, just even moreso now). And tonight at the dinner table she was still and had a funny look on her face, like she wasn't well -- and when I asked her she said her heart -- but when I said "what?" she said, no, she was fine?? And she really seemed to be. She put on a really long puppet show for all of us tonight. It was cute.


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## my little penguin (Dec 11, 2012)

Hugs--
Records review does not mean you still can't see some other Gi locally- it just means the folks who see lots of kiddos who don't fit Olin the box will look over her records and figure out if her case should be more watch and wait or actively treat as xyz.

Going to the second local Gi is good since treating from far way is hard but getting an expert opinion once or twice is well worth it.


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## Suzysu (Dec 12, 2012)

I agree with MLP - get an expert expert to look over her notes but still go to the second paed GI in town. Good Luck xxxx


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## Momto2girls (Dec 12, 2012)

Do you all think Cinci is better than CHOP for a second opinion? I ask b/c one of my best friends is in Philly which would make going there (if we need to) much much easier than Cinci. Also, her nephew has Crohn's and is seen there so she thinks she can get us in/seen/reviewed more quickly if necessary. I might go check their site for any info on second opinion stuff.


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## imaboveitall (Dec 12, 2012)

What MLP said, on all points.

If you saw V, you'd laugh at the idea that she could have a disease that affects the gut. Look at her photos on my profile page.
Scopes (she'd had FOUR in 4 years) always perfect.
Yet she's about to begin Remicade.

Cincinnati has an excellent rep. I'd go there if you can.

Much understanding :heart:


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## Momto2girls (Dec 12, 2012)

So in an interesting turn of events, when I called the GI nurse today she basically advised me to go back to our old GI doc -- at least she was treating her (with the sulfasalazine) and was willing to run other tests. So, I said fine -- whatever it takes. So, she said she'd message her and believe it or not IN THE SAME DAY I heard back. She's ordered an MRE and a lactoferin lab (has anyone heard of this? the nurse said they do not run feacal calprotectin anymore but that lactoferin is very similar.) So, I am sad and nervous about the MRE b/c she has to be sedated, but I think we are going to have to do it.  Ugh, I hate this for her! But I can't have her sick all the time either!


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## my little penguin (Dec 12, 2012)

If she is 4 then she does not have to be sedated.
Is it a kiddie hospital?
Ask about distraction techniques 
More later


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## Momto2girls (Dec 12, 2012)

She's 5 in March. It is -- Children's Mercy.


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## Suzysu (Dec 12, 2012)

When is she having the MRE? soon? xxxx


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## imaboveitall (Dec 12, 2012)

Mom2, V has lactoferrin WEEKLY nowadays.  It has been a test run often in her 4.5 years of Crohn's. (never weekly so I know he is worried :hallo3

HOWEVER. It has NOT BEEN reflective of her disease state. At all.
She is in sad shape in the sm bowel and her LF this week was ...NEGATIVE.
Last week it was 36.
It has been 5000+ and she has felt fine.
The Saint says it is not great for small bowel inflammation. He does it to monitor her colon.


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## my little penguin (Dec 12, 2012)

Our hospital lets you use movie goggles which provide sight and sound ( like a pilot helmet)
While inside the MRI . Plays the odd favorite movie so no wiggling.
The entire room is theme painted .
MRI is outer space so the MRI table is a space shuttle etc....

We took DS to Cincy twice for a second opinion once at dx and once before remicade .
The first time we saw a top Gi but not Ibd specialist since we were trying to rule in/out egid .
Second time we were in the Ibd clinic . Both visits lasted 20 minutes or so. For a five hour trip ......
Both were well worth it since every test slide etc was reviewed by their team independently - some of the results were the same some were not.
The phone calls and emails before lasted close to two weeks each time so the doc had all the information when you got there to form a good plan just for your child.
The stay would have been longer both times but DS tends to cause confusion and ended up needn't a scope both times at our local place right before we went out plus mre/ct so all the necessary tests were done- just reread -
Only one doc does second opinions at Cincy for the Ibd clinic. Close to two month wait.
General Gi are quicker but you are going for the expert.
First time changed the course of our meds and confirmed dx in an atypical Ibd kid so that was good. Second time both gi's here and there thought they had a good reason for DS underlying extra symptoms both agreed- our Rheumo disagreed said his system just needed more time on remicade and of course right now he looks to be right.

So even when the experts agree they are still making their best educated guess based on what is in front if them at the time which is why when you have a round kid in a square hole your best bet is someone who sees lots of kids.


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## Patricia56 (Dec 12, 2012)

CHOP

to answer your earlier question.

You contact them and they will help arrange everything including if you need to stay at Ronald McDonald House - or so other folks have posted repeatedly.

CHOP sees upwards of 4,000 ped IBD patients a year. They have the top ped IBD doc in the world, Baldassano. And I have only ever heard good/great things about their care and the quality of the doctors.

The reason  you want to go to a place that sees thousands of kids for a 2nd opinion is because they have volume on their side. They have literally seen every possible presentation of IBD that exists. Having seen it they can recognize it when they see it again - and recognize when they are seeing something that is actually more typical but just looks odd for some reason. They have a depth of experience that other places can't match. The ped GI in Kansas who sees maybe 100 ped IBD patients a year cannot possibly offer the same level of expertise as the ped GI at CHOP who spends all day every day steeped in diagnosing and caring for kids with IBD.

And that's the other advantage of volume. They have probably tried everything anyone can think of to treat kids with IBD who are hard to treat. They do not have to reinvent the wheel.

Just my opinion based on common sense and on what I've heard or been told about other people's personal experiences at CHOP.


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## Momto2girls (Dec 13, 2012)

So I called CHOP and registered and now I need to fax paper work to them. I think I am going to wait until I at least have to stool culture back before I send anything. 

The MRE is scheduled -- but not until mid-Feb! I was surprised as we got in for her scope a lot quicker than that? My husband picked up the containers for the stool culture today so hopefully we'll get that tomorrow and can take it in. Don't know how long those results take.

I didn't see any blood in her stool this morning, though it was quite dark? Now, her GI says BLACK like as black as a black marker for blood in the stool -- is that right? Not really dark brown?

And when she does have red blood it is never for more than 2 days -- 2 days then gone for a couple of weeks, then 2 days. Is that a strange pattern?


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## my little penguin (Dec 13, 2012)

Start faxing since they are going to keep asking for more . Stool results take at least a week -or more to get results. You can send those when you get them. Trust me it will take that long to just get all of the info they want together.
Feb for an mre is normal wait when there has not been a dx of Ibd yet if she was dx then the Gi dept usually makes the call to the radiology dept on when they want it done by .
Good luck - the paperwork side is not so much fun but well worth it.


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## Patricia56 (Dec 13, 2012)

Stool samples -

if he's called for them to be tested for c. diff and for things that cause diarrhea (usual reason for stool testing) it's my understanding (having done just a few stool samples in the past 7 years) that the lab won't even do the tests if the stool samples are solid waste as opposed to liquid.

They will test for blood whether it's frank or microscopic.

And that's it.

If that's about all they're testing for the results should be available within 1 to 2 days.

The frank blood in her stool could be from internal fissures or hemorrhoids. Maybe they are able to heal up a little due to changes in her diet or something and then get aggravated and start bleeding again. 

The dark blood the GI is talking about supposedly looks like charcoal or coffee grounds that are black. It is very distinctive I've been told by our GI PNP and she said it could not be mistaken for anything else. I will take her word for this as I hope never to see it.


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## izzi'smom (Dec 14, 2012)

I have heard CHOP is outstanding...(((HUGS)))
THere was no rhyme or reason to Izzi's blood...came and went at times and was constant at other times.
I know MRI can get pretty backed up at times...the exams are lengthy...hoping the time passes quickly so you can get some answers and a second opinion! :heart:


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## DustyKat (Dec 16, 2012)

> I didn't see any blood in her stool this morning, though it was quite dark? Now, her GI says BLACK like as black as a black marker for blood in the stool -- is that right? Not really dark brown?


If the doctor is talking about maelena then you really won't be left guessing. It is black and tarry and very offensive smelling. 

Dusty. xxx


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## kimmidwife (Dec 16, 2012)

Momto2girls,
My little daughter also has blood on and off not consistent. You mentioned something back a few days ago.(I am catching up) that she is always very thirsty. Has she ever been checked for diabetes? I don't mean to scare you but extreme thirst can be a sign of diabetes. Have you ever mentioned it to the doctor?


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## Momto2girls (Dec 18, 2012)

Kim -- We have had her tested for diabetes several times. (Not lately, though). But, it has always been negative. Once, probably close to 2 years ago, she had high blood sugar by blood test bu apparently not high enough to be concerned. I keep reassuring myself about diabetes b/c I understand it is quite accute and pops up within a matter of weeks, and she's been crazy thirsty for forever now. So it is just how she is? Or she's just trying to make herself feel better?

We took the stool sample in to the hospital lab on Friday night -- not sure how long it will take but I don't think they are testing for blood -- they were looking for the inflammatory marker that is similar to feacal calprotectin -- can't remember what it was called? Not sure how long the results will take.

Blood seems to be gone for now. Had tummy ache today and was up last night. ?? Don't know what to think.


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## Momto2girls (Dec 18, 2012)

Lactoferin...that's the lab they are doing.

And they said any kid under 10 has to be sedated for the MRI.  Ugh. I might have to cancel it depending on the labs. We'll see.


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## Momto2girls (Dec 21, 2012)

Ready to give up! Honestly, though. I must be wrong -- it must not be IBS -- either I'm crazy and she's fine or it is something else. I just must be barking up the wrong tree!? 

Her Lactoferin is fine. Which the nurse said is a good indicator there is no intestinal inflammation. Her bloodwork (from Sept) is fine (except for elevated platelets which the docs weren't concerned with). Her scope (from April) showed inflammation but it was mild and it wasn't chronic. 

I kinda want to go back to Celiac, but all of her Celiac tests are negative too! 

I guess she just has tummy aches, and bleeds from constipation. I don't know what else to think?


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## Farmwife (Dec 21, 2012)

OK remind me...
Did they take biopsy from the scope?
Have you done the GF diet?
What color is the blood?
Other than scopes, what other imagining test; if any has she had?

Hang in there!


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## izzi'smom (Dec 21, 2012)

I would check with another facility for the MRI...Izz was FOUR and not sedated. The study had a small amount of motion from breathing because the breath holds were super long, which you won't eradicate by sedating. 
(((hugs))), mama...how frustrating to not be able to get answers. Have you treated her for her constipation? Has anything helped?


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## Momto2girls (Dec 21, 2012)

So her scope did have biopsies. They did find inflammation in the ileum and large (left?) colon. And H. Pylori in her stomach. The only other imaging she's had is x-rays for constipation. We have treated her constipation with miralax and for a while we were also on senna, and even with that she'd get backed up -- to the point of almost a blockage. We have an MRE scheduled but I want to cancel it. I don't want to put her under for no reason whatsoever.

The blood is red. And we have done a lot less gluten in her diet (not strict GF) and I do think it helps. I recently tested very sensitive to gluten -- so I am going GF and I'm thinking she's going to have to as well. Maybe it is as simple as that?

Thanks everyone for your ongoing support and for trying to help me crack the code. I am guessing it just must be something else. She's having a pretty bad eczema flair right now, and she has severe food allergies, so maybe it is all just related to that?


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## Farmwife (Dec 21, 2012)

Your girl sound like Grace. If you find out make sure to tell me.

Was the blood dark red or light red? Was it mixed in the poo or just covering it?


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## kimmidwife (Dec 21, 2012)

Momto2girls, back to what we were discussing a few days ago ( sorry I have been sick and so have only been spending a few minutes online here and there and did not have a chance to get back to you)
Has she had any work up for the excessive thirst? There is something called diabetes insipidus Which has nothing to do with blood sugar and insulin but has to do with the anti diuretic hormone and the kidneys. She needs to be worked up for this. This article has some good tips for when to get it evaluated: 
http://www.nlm.nih.gov/medlineplus/ency/article/003085.htm


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## Momto2girls (Dec 21, 2012)

Kim, it is so interesting you say this, b/c her ped did suspect this about 2 years ago? That is kind of where this whole thing began, actually!? I remember we were concerned about how often she went potty and not too long after being potty trained she was having accidents again...because of bladder spasms. She was thirsty all of the time so they kept testing her for bladder infections and diabetes, but she never had either. She always had a trace amount of blood in her urine though -- I do remember that. Anyway, I think she did have a urine test that came back showing her urine was very diluted. So they maybe suspected Diabetes Insipidus, they re-ran the test, and it was OK. (If my memory is correct.) Shortly after that is when we ended up at Urology Clinic -- and that's when they said her bladder spasms were due to constipation. Even though at the time it wasn't so severe, they said her system is just really sensitive and even the smallest amount of constipation makes her bladder spasm. So, we started Ditropan (which she reacted horribly too), and we started avoiding any artificial colors, citrus fruits, etc. Anything hard on the bladder. Things weren't getting better which is when we ended up at Nephrology. And I do think she showed slightly diluted urine then, too. But they said if she's been drinking a lot then of course it would be dilute. It was then we got onto quite a bit of miralax. And when we took her for her 4 year checkup the ped asked me how she was doing and I told him she had diarrhea all the time. I thought it was the miralax. It turned out she was impacted...even with tons of miralax...so off to GI we went. They added more miralax and senna and within 2 weeks of a clean out she'd be impacted again. So they scoped her....and you guys know the rest.

Sorry for such a long post...but maybe hearing the full story would be interesting or help someone else? 

I will mention this all started not too long after she had a very serious anaphylactic reaction to a cashew nut at age 2 years 2 months. She was on prednisone after that and he whole system seemed to be super wonky sensitive to everything after that. Prior to that she was really pretty normal?

As far as Diabetes Insipidus -- we don't think they've ruled it out completely, right? Just ruled it out for that time back then? Or you either have it or your don't?

ETA: I thought I would add that my brother has crohn's and my dad and father-in-law UC, so that's probably another reason why I pretty much just thought Crohn's.


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## Momto2girls (Dec 21, 2012)

Farmwife said:


> Your girl sound like Grace. If you find out make sure to tell me.
> 
> Was the blood dark red or light red? Was it mixed in the poo or just covering it?


Yes, of course and you have to do the same.  

The blood is usually bright -- it seems to be mixed in usually. The first time we saw it we seemed to notice just a coating.


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## imaboveitall (Dec 21, 2012)

Mom2:
Violet's lactoferrin which is done WEEKLY now was last week NEGATIVE.
Yet her small bowel is a disaster.
Lactoferrin according to her doc, The Saint is NOT ACCURATE for sm bowel, only colonic inflammation. He does it to monitor her colon.
Neg LF does NOT mean she doesn't have inflammation in her sm bowel.

An MRE is necessary to visualize the sm bowel.
I'd do it even if they must sedate.
Read Stephen's thread. Read about Dusty's kids.

READ V's thread:
PERFECT labs.
PERFECT scopes.
PERFECT weight.
EATS any and everything (until pillcam results came back and is now on mostly formula)
PERFECT STOOLS, 1x day.
About to start Remicade because pillcam and ONLY THE PILLCAM showed such severe inflammation "throughout the small bowel" that "fistula and/or PERFORATION is likely".

MORAL:
Small bowel disease can be isidious and SILENT and not show in labs nor scopes.


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## my little penguin (Dec 21, 2012)

Mast cell disorder dr castell through Bch
Give her a call
Fits food allergy Gi stuff and urinary stuff
http://www.medicine.wisc.edu/~williams/mast_cell_activation_2011.pdf
http://www.mastocytosis.ca/2011 MSC Medical Lecture with Slides.pdf

More later


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## imaboveitall (Dec 21, 2012)

MLP is the BOSS. 

V had urticaria pigmentosa (cutaneous form of masto) as a child. Self-limiting case, gone by age six.
I did have her biopsies stained for gut masto.
Ask for a tryptase level next time they draw bloods. It's usually elevated in systemic masto, though not always in MCAD (mast cell activation disorder) which can also cause similar symptoms.


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## kimmidwife (Dec 21, 2012)

Momto2girls 
I would bring it up again at the pediatrician. It definitly needs to be checked into again. has she had her thyroid checked? it can also be a symptom of cushing or hyperparathyroidism. MLP I could not find excessive thirst as a symptom of MCAD so that does not seem to be related.


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## kimmidwife (Dec 21, 2012)

Going to a convention this weekend for families with sick children so I won't have that much time on the computer but I will try to look back and check in.


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## Catherine (Dec 22, 2012)

What testing was done for caelic? Was she eating at least two slices of white bread a day for 6 weeks prior to the testing?  If not you can get false negatives when testing my upper scope


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## Momto2girls (Dec 22, 2012)

MLP -- that's very interesting! Not sure I even really understand it all. Is it the same as ME? Or similar? Because I did ask about that and of course the biopsies were not tested for mast cells. And the doctor dismissed it saying basically those kids are quite a bit sicker than Gracie. 

For Celiac we've done blood tests (not genetic just the transglutiminase stuff) 3 times now. All negative. And then they did biopsy for it when they scoped and negative. The GI did say how shocked she was. She really thought Celiac. But no she wasn't eating any white bread...I wasn't limiting gluten... But I wish I had known to "overdo" it.

As far as the silent disease I totally get that but my doctors do not. At all. And I am starting to think I am the crazy mom they already think I am!


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## Catherine (Dec 22, 2012)

Maybe the gene test for celiac is the way to go.  My understanding is it can't be used to dx but a negative test will rule it out.


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## Suzysu (Dec 22, 2012)

MT2G - I know how you feel - I go throught the same thing with Freddy - the sensible scientist in me says 'all the tests are more or less negative, so he must be fine, stop being a fussy mad mother, pull yourself together and get on with things'! but when he's doubled up in pain lying on the floor crying, or I'm rubbing his back while he's vomiting up his last meal, the mother in me says 'This is'nt right, or normal, and this can't carry on - you have to find out what is wrong with him so you can help him'.
I think given your family history and given your little girls symptoms, I think you should have the MRE scan - if that is all normal then maybe you can look further into managing her symptoms in other ways - but as everyone else says sometimes diseases present in unusual ways and if your instinct is telling you there is something wrong with your girl then go with it. - Sending you big hugs xxxx


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## Farmwife (Dec 22, 2012)

I've been there...I'm still there....I wish I was making too much of this. 
I want Grace to have clear scopes but then I'm worry, what else does she have. Then I want scope to show something, then I worry because they would show something! Welcome to my up world. :shifty:
If our girls just had one thing or maybe two thing wrongs that were no biggey, we could treat it and move on but this type of stuff you can't. 
You and Suzysu and I are not insane!!!! It's real and answers have to be gotten! How?????When you figure it out let me know.


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## my little penguin (Dec 22, 2012)

Here is a link to a support group on KFA for mcas
They can give you the who to call etc....
I get the you know something is off but not what and with normal tests ....
Well...
We had family and friends even our old ped telling us DS was just a skinny kid - too many doc visits were the stomach problems --- all kids get stomach aches .
Etc....
Thankfully our Gi did not agree - he knew something was up just not what -- even then it took over a year of looking.

As far as the mre is there another children's hospital within driving distance ?
It wouldnt hurt to ask to see if they let kiddos do them awake.
The script can be used anywhere.


Good luck


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## my little penguin (Dec 22, 2012)

http://community.kidswithfoodallergies.org/displayForumTopic/content/9454934902920635


Opps here is the link


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## Momto2girls (Dec 22, 2012)

Suzysu -- thank you soooooo much for your posting. YES! That is EXACTLY how I feel. To a T. Like, goodness gracious it must be ME. I must have that horrible syndrome that I learned about in undergrad psych -- you know muchausen syndrome by proxy (or however the heck you spell it). Where I want something to be wrong with my child and put her through all of this uneccesary testing. And everyone around me is thinking, "why can't think lunatic mother just be grateful everything's fine and move on!?"

And then I think, what if she grows up always sick, and she never grows another inch taller and has some horrible condition brewing and I never do anything about it and I grow old regretting not making someone listen to me! 

ARGH!

Farmwife -- we have to stick together in this, for sure!! I hope you scope gives you answers. The most frustrating thing to me is I'm afraid we scoped "too soon" -- that we moved straight to the scope -- and we didn't get an "all clear" but we also didn't get a diagnosis, and now we're left to wonder.

As far as the MRE -- let's say we have to sedate. In all honesty, are we better off just scoping? As long as we're putting her under!?


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## Momto2girls (Dec 22, 2012)

my little penguin said:


> Here is a link to a support group on KFA for mcas
> They can give you the who to call etc....
> I get the you know something is off but not what and with normal tests ....
> Well...
> ...


Thanks!! Checking out the forum now. I will let you know what I figure out. (Though I will tell you that I already talked to our allergist about her scope and he reviewed the results as well since they did look for EoE -- and he never mentioned this...but who knows!?)


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## my little penguin (Dec 22, 2012)

Scoping vs mre ....
Mre will show small bowel
Scope colon mostly
So it depends where her damage is.

For DS second scope we chose to wait until he was flaring since we were trying to catch EoE.
His first upper scope was normal.
We meet Gi in the end of July decided to wait
Bleeding and weight loss by beginning of sept so we scoped even though we had a second opinion scope already scheduled for nov .

Not sure what the answer is ...


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## my little penguin (Dec 22, 2012)

Only a few allergists specialize in mcas different than mastocystosis.
dr castells is one of the few who will see kids .


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## Suzysu (Dec 23, 2012)

I am certain I am on some kind of list of 'special mothers'!! last time we went the guy just kept smileing that smile that says 'i'm just gonna smile nicely at you till you go away you mad person'!!!!
I too am worried we scoped too soon or at the wrong time (he had started to improve the week before the scope).
I think the MRE would show the bits of the bowel that the scope can't see - so it may be worth a go.
Good luck with your decisions xxxx


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## Momto2girls (Dec 23, 2012)

Yes, I am sure I am on that very same list. Why am I up at 2:35 am? Why because Gracie is, of course! Asking for a drink...argh!!! And my hubby is out of town and my older daughter is in the nutcracker so we've been up late for shows and I just want to have an almost 5 year old who can sleep thru the night!


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