11-22-2017, 10:51 AM   #61
Jabee
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Gosh 12 weeks is a long time to wait. What grade is he in? There are a lot of people who homeschool their children; I think it depends on both the child and the age. Iím assuming his school knows about his medical issues? Could his teachers be helpful about sending work home and modifying his assignments? So sorry heís no better.
11-22-2017, 11:29 AM   #62
Pilgrim
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Gosh 12 weeks is a long time to wait. What grade is he in? There are a lot of people who homeschool their children; I think it depends on both the child and the age. Iím assuming his school knows about his medical issues? Could his teachers be helpful about sending work home and modifying his assignments? So sorry heís no better.
We don't have a diagnosis for him so there's nothing I can tell them but his teacher is aware there's an issue. Luckily he's a good student and hasn't fallen behind.
He's 9 years old.
11-27-2017, 07:59 AM   #63
Pilgrim
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So in case there is a constipation issue my son was put on one cap of Miralax per day. First few days were normal 4 Bristol, and now liquid or very soft and he's had two accidents related to urgency. One of the accidents after I dropped it down to a half cap.
I guess I will call GI and see if we can drop it. This would be a nightmare for him at school. Pain levels are the same so I think it doesn't help anyway.
11-27-2017, 08:09 AM   #64
my little penguin
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Just remember any change to miralax is actually whatever dose it was three days before
It takes three days to start working
So if he was only had one day of 1/2 cap
Then that was actually the dose from two days before

That said maybe GI will let you stop and then start at 1/4 cap
You can use a kitchen gram scale
Put the cap on
Hit Tare so it reads zero
Then slowly start at 3-4 grams etc
Or what the GI recommends
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11-27-2017, 08:18 AM   #65
Pilgrim
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Thanks!
11-27-2017, 08:34 AM   #66
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Second what mlp said about the 3 day rule on miralax.
Grace was up to 3 adult doses a day.
Ya, that was fun trying to get a young Grace to drink. Lol
Also push water big time. Since miralax pulls water from the body it can actually cause constipation and dehydration.
11-27-2017, 08:57 PM   #67
DanceMom
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Our GI does not order Miralax unless an x-ray shows constipation (or it is obvious). Just be cautious if you're not sure that constipation is the issue. I used to think common medications like Miralax and Ibuprofen were relatively harmless. Then I watched A have a scary reaction to a very common antibiotic and my opinion changed. Hope your boy gets some relief.
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12-03-2017, 08:34 AM   #68
Pilgrim
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We are still waiting on scope date. All of his Labs, 11 vials worth, came back normal. His pain is steady on every day. What is this?
Could it even be Crohn's with all normal labs?
This is turning our lives upside down. He is not coping well.
I am calling GI tomorrow to beg for as quicker scope.
12-03-2017, 09:03 AM   #69
Jabee
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Please forgive me for not remembering. Has he been tested for celiac disease? Has he been evaluated for abdominal migraines? In addition to the 50,000 other things you are doing, it might be worth checking that out.

https://americanmigrainefoundation.o...inal-migraine/

https://www.ncbi.nlm.nih.gov/pubmed/11817981

https://www.ncbi.nlm.nih.gov/pubmed/9890466

It must seem like I am foisting migraines upon you! I donít mean to! Itís just one of the things that pops into my mind when thinking about children and abdominal pain. I grew up with headaches, my sister with stomach aches; there is a strong family history of migraines on my Motherís side.

This must be so difficult for you; sorry I canít be of more help.
12-03-2017, 09:08 AM   #70
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All normal labs here! Only a scope showed the issue.
12-03-2017, 10:06 AM   #71
my little penguin
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Normal labs here as well
Only biopsy showed issues
12-03-2017, 11:35 AM   #72
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Normal labs here - scopes showed ulcers in the colon and very red and friable TI. The only thing her labs showed was anemia.

M's only symptoms at the time were abdominal pain and constipation. I was SURE it was IBS and we were ruling out IBD.

I really hope they can get him in for scopes faster. Can they admit him through the ER for pain? Once you're inpatient, scopes can be done the next day (at least in the US, no idea about Canada).
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12-03-2017, 12:47 PM   #73
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Unfortunately the people who do pediatrics are 4 hours away. I don't know if I would trust anyone here to do it. I think ER trip might get him a CT scan in our location. Would that help? Or just a bunch of radiation exposure for nada?
H was anemic with elevated esr and low albumin when she was initially scoped but things had been terrible for a long time by that point.
Farmwife and My Little Penguin, did your kids have pain then?
12-03-2017, 12:49 PM   #74
Pilgrim
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Jabee we haven't looked at abdominal migraines - I will read about that. They ran the celiac panel on him though. It was negative.
12-03-2017, 12:53 PM   #75
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A CT scan could show inflammation, if that is the issue.

Would you be able to drive to a pediatric hospital? I know it's far, but would it be more likely that they'd do testing or admit him there? I'm just thinking that an adult hospital will not really know what to do with an 9 year old in pain. A pediatric hospital is more likely to admit to find out the cause - at least, that's the case here.

In the juvenile arthritis world, since there are so few pediatric rheumatologists in the US, driving 4+ hours one way is common. It's tough, but that's the way it is. We were lucky that our pediatric rheumatologist was only 2 hours away.
12-03-2017, 12:53 PM   #76
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A CT scan could show inflammation, if that is the issue.

Would you be able to drive to a pediatric hospital? I know it's far, but would it be more likely that they'd do testing or admit him there? I'm just thinking that an adult hospital will not really know what to do with an 9 year old in pain. A pediatric hospital is more likely to admit to find out the cause - at least, that's the case here.

In the juvenile arthritis world, since there are so few pediatric rheumatologists in the US, driving 4+ hours one way is common. It's tough, but that's the way it is. We were lucky that our pediatric rheumatologist was only 2 hours away.
12-03-2017, 01:06 PM   #77
my little penguin
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It would need to be a ct entography not a regular ct
And adult hospital have much higher radiation settings on their machines than pediatric hospital
Pediatric hospitals go with the lowest possible ďdoseĒ


As far as my kiddo prior to dx
Abdominal pain
Rectal prolapse
And no weight gain
Which turned into slow weight loss
And 8 months later rectal bleeding so he was scoped

If the pediatrician is 4 hours away how do they handle kid stuff

I know a parent here drove to sick childrenís ER
Then was admitted tested /scoped quickly
12-03-2017, 02:15 PM   #78
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I am just going to call GI and honestly ask if we could do that - drive to ER and get a scope. Maybe he'd even tell me when he is on duty.
12-03-2017, 02:20 PM   #79
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Have a there is no "symptom relief between episodes" which I think would rule out abdominal migraines. There aren't even episodes. It's been pretty much relentless abdominal pain. Usually in the moderate pain category. Every few weeks he might have a couple of mild pain days but those are coming less and less.
12-03-2017, 02:23 PM   #80
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Could it even be Crohn's with all normal labs?
This is turning our lives upside down. He is not coping well.
I am calling GI tomorrow to beg for as quicker scope.
O.K. I know you know the answer to that question and you are just tired and desperate to get help for your son and maybe a little desperate for it not to be IBD. Not that I am saying it is that. BTDT. But in the interest of a complete response.....

T had normal labs and normal growth and everything. Her only symptom was abdo pain. FCP was the kicker for us. Is there any way you could push the GI to get that test done right away. I get having to wait for scopes, room scheduling, staff, time etc. But an FCP is no skin off anyone's nose.

Celiac testing can also come up negative but Celiac could be found on endoscopy. It just happened to be girlfriend's daughter. But don't pull gluten until after an endoscopy because then results won't be accurate.

I hate to even suggest this because you know how I feel about it but it could also be IBS (I think I just threw up a little in my mouth). Have you looked at and tried the FODMAP diet? It doesn't treat IBD whatsoever so you could try it and still not screw up scopes, FCP etc. It is a hail Mary pass at this point but I remember being in your position and desperate to try anything.
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Daughter T dx 1/2/15 at age 11
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Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-03-2017, 03:21 PM   #81
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Pain, yes!
Cycles but never ending.
It finally stopped when she started Humira.
12-03-2017, 03:37 PM   #82
my little penguin
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I wouldnít change diet fodmaps or others wise
Since you may be fixing something other than ibd
My oldest was scoped horrid belly pain

Scope found severe lactose intolerance even though kiddo drank milk by the gallon

Hope the GI helps
But wouldnít expect them to say go to ER to be scoped

They probably wouldnít be allowed to say that
Unless they felt he actually needed the ER that minute
Vs you as a parent who is concerned for your child taking them to the ER
12-03-2017, 03:48 PM   #83
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Jabee we haven't looked at abdominal migraines - I will read about that. They ran the celiac panel on him though. It was negative.
I am on a Celiac forum also, it is very common to have negative panels and still have Celiac or gluten intolerance.
12-03-2017, 06:03 PM   #84
DanceMom
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A was sick since birth - FTT, bloody stools and diarrhea, erythema nodosum...lots of symptoms. Labs were always mostly normal which delayed a diagnosis. If something was off, even way off, they'd consider it a fluke. Sure enough, tested again a few months later and it'd be normal again. Very frustrating! I think that some kids are very sensitive to what's going on in their bodies and they detect a problem before science can. Just seems to be that way in our experience. If the scope doesn't give you answers (and it only sorta did for us) wait a short time then continue your search for answers. Unfortunately your search could last years. We finally settled on a generic diagnosis.
12-04-2017, 01:30 AM   #85
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Do you access to the blood results? Do have any previous lab results?

If so compare the results and post any results where there has been a change. Look at hemoglobin levels, ferritin, and any other iron numbers you can find. Just compare the results.

You are looking for a trend either way.
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DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-04-2017, 07:16 AM   #86
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If the pediatrician is 4 hours away how do they handle kid stuff
In our experience the GP will try and call a pediatrician to get med recommendations. It's not perfect. Not sure about other kid stuff.
12-04-2017, 07:17 AM   #87
Pilgrim
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Do you access to the blood results? Do have any previous lab results?

If so compare the results and post any results where there has been a change. Look at hemoglobin levels, ferritin, and any other iron numbers you can find. Just compare the results.

You are looking for a trend either way.
These would be his first full panel. Plus I don't have access.
12-04-2017, 07:29 AM   #88
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O.K. I know you know the answer to that question
To be honest, I didn't know the answer. I do know that now, down the road of meds, my H can have fine labs and be riddled with disease. But I was not sure that any of our kids had good labs at diagnosis. It's surely been said but we have years of stories, worries, cups and saucers, bottles of wine and bars of chocolate on this forum. So thank you all for saying it in black and white on this thread so now I can accept it as a real possibility. It will give me fuel as I argue the necessity for quicker care.
12-04-2017, 12:35 PM   #89
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He has scopes after Christmas! I am bringing chocolate for his secretary who was a great help. He has to start prep Christmas day but I don't care!
12-04-2017, 12:53 PM   #90
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Yes, a big box of chocolate is in order.

Now remember that Grace's first scoped looked clear visually but the biopsies showed a different world.
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