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05-02-2017, 07:12 PM   #31
Maya142
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I think izzi'smom's daughter was on Tacromilus for a while. If you search, you may be able to find some threads from a couple years ago.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-02-2017, 07:33 PM   #32
Farmwife
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Periactin worked for great for Grace.
I know it doesn't work for everyone but we had to stop it because it was making her a crazy food kid. Lol
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
05-02-2017, 07:51 PM   #33
DanceMom
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Periactin worked for great for Grace.
I know it doesn't work for everyone but we had to stop it because it was making her a crazy food kid. Lol
We've done Periactin before. It helped her gain a pound or two. I just noticed her paperwork says "malnutrition". Kinda hurts to see it in print.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
05-02-2017, 07:56 PM   #34
Maya142
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Has she tried drinking formula? I'm sure you've done Boost/Pediasure, but what about something like Peptamen? It might be easier for her to tolerate and she could put some weight on.

Alternatively, you might want to think about a tube. I know it's not ideal, but it can really help.

My kiddo lost a LOT of weight before her GI finally insisted on a tube. She was so against it till she realized how much better she felt when she got enough calories. She gained nearly 30 lbs and is a much happier, more energetic kid.

She was so severely malnourished that she developed an Refeeding syndrome and an arrhythmia...I had never realized how serious malnutrition was and I wish we had done something earlier instead of letting it get to that point.
05-02-2017, 08:43 PM   #35
DanceMom
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Has she tried drinking formula? I'm sure you've done Boost/Pediasure, but what about something like Peptamen? It might be easier for her to tolerate and she could put some weight on.

Alternatively, you might want to think about a tube. I know it's not ideal, but it can really help.

My kiddo lost a LOT of weight before her GI finally insisted on a tube. She was so against it till she realized how much better she felt when she got enough calories. She gained nearly 30 lbs and is a much happier, more energetic kid.

She was so severely malnourished that she developed an Refeeding syndrome and an arrhythmia...I had never realized how serious malnutrition was and I wish we had done something earlier instead of letting it get to that point.
We discussed formulas briefly. The issue is compliance. We've tried Boost Breeze and a few shake type drinks in the past and she won't drink them. It was a constant battle and bribery/consequences only made the situation worse. A tube would be a last resort and she's not completely opposed. She just won't drink it. We're hoping the Periactin helps.
05-02-2017, 09:00 PM   #36
my little penguin
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If she won't drink anything
Then you and the doctors need to have "that" discussion with her
Malnourished isn't simply underweight or tiny
The docs basically told Ds
Either you drink x amount in x amount of time or you get an ng tube
Period
He decided despite the poor horrid taste of elemental formula he would drink it
He wanted to avoid a tube
That was a year ago
He is currently een again and has been for the past 6 weeks


Not getting proper nutrition is not an option
This isn't about picking out an outfit
The docs need to explain to her very clearing
Malnutrition can lead to organ damage and failure
As Maya142 stated even the heart
It's not about taste or liking or disliking
Kids can be strong willed and that is great
But not when it affects their health

You can also get a psychologist to talk with her about why it's important

From your posts low weight seems to be an ongoing issue and not just a new issue
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05-02-2017, 09:07 PM   #37
DanceMom
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If she won't drink anything
Then you and the doctors need to have "that" discussion with her
Malnourished isn't simply underweight or tiny
The docs basically told Ds
Either you drink x amount in x amount of time or you get an ng tube
Period
He decided despite the poor horrid taste of elemental formula he would drink it
He wanted to avoid a tube
That was a year ago
He is currently een again and has been for the past 6 weeks


Not getting proper nutrition is not an option
This isn't about picking out an outfit
The docs need to explain to her very clearing
Malnutrition can lead to organ damage and failure
As Maya142 stated even the heart
It's not about taste or liking or disliking
Kids can be strong willed and that is great
But not when it affects their health

You can also get a psychologist to talk with her about why it's important

From your posts low weight seems to be an ongoing issue and not just a new issue
We've had "that talk". We've bribed her. We've enforced consequences when she wouldn't drink it. If those things worked for your son....fabulous. But they didn't work with A. She gagged, vomited, and worked herself up over every single one we tried. If her doctor proposed a tube we'd probably go that route. But we're trying Periactin first.
05-02-2017, 09:12 PM   #38
pdx
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She gagged, vomited, and worked herself up over every single one we tried. If her doctor proposed a tube we'd probably go that route. But we're trying Periactin first.
My daughter just couldn't drink the formulas, either. She hated the idea of an NG tube, but--like Maya's daughter--she ended up finding it much easier than drinking formula. And she was amazed at how much better she felt within a few days of starting the tube feeding; she had forgotten what it felt like to have normal levels of energy.

Anyway, with luck you won't need it, but if the Periactin isn't enough, keep the tube in mind.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
05-02-2017, 09:30 PM   #39
my little penguin
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I think the big difference on why it worked
Ds was inpatient
No solid food allowed per docs
They give him
water
And formula
That's it
He had been npo for days
And he saw the kids inpatient on the floor with tubes
So very different then being at home with food choices
05-02-2017, 09:35 PM   #40
Maya142
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Fingers crossed the Periactin works.

My kiddo was VERY strong-willed too. It helped that her GI was the one doing the insisting and I wasn't. I doubt she would have listened, if I was the only one talking to her.

She resisted the tube for a LONG time, especially the NJ tube since she had to keep it in and couldn't insert it by herself. But at some point, her GI told her what would happen if she kept losing weight - her organs could shut down. That shocked M - I don't think she had realized weight loss can be so serious.

After that, she agreed to the NJ tube and then as we started feeds, she developed Refeeding syndrome. Refeeding syndrome was first discovered with Holocaust concentration camp victims, so you can imagine how malnourished she was .

Her electrolytes were all over the place and that caused the arrhythmia (which can be fatal, which is why they monitor so carefully). It took 6 months of potassium and phosphate supplements before things got back to normal.

I promise I'm not trying to terrify you - just telling you what I wish I had known a couple years ago. I really had no idea how serious being malnourished was.

It's even worse with growing kids since they need nutrients for growth and development.

Anyway, keep a tube in mind. It might even be worth asking your GI to move things along (if she doesn't gain on Periactin).

Feeding Tube Awareness has lots of great resources, including videos of kids inserting their own NG tubes.

A is tough - I bet she'd learn to do insert it quickly AND I bet she'd enjoy showing her friends her party trick .
05-03-2017, 05:53 AM   #41
DanceMom
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Thanks for the information. Neither of us are opposed to a tube. I just think our doctor wants to try this first. We're also going to slowly increase fat because he thinks the diet is too restrictive and is causing more harm than good. It's difficult when doctors don't agree and you're left deciding which recommendations to follow. I have to update him next week so we'll just take it one day at a time for now.
05-03-2017, 09:21 PM   #42
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I am sorry she is having such a rough time. We are going through the same issue with weight and Caitlyn just had a G tube placed two weeks ago. It hasn't been so couple of rough days in the beginning but it is better now. She hasn't gained weight yet but the doctors are happy she hasn't lost anymore and we are taking Day by day.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
05-05-2017, 08:36 PM   #43
DanceMom
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Took A to the ER this morning for relentless diarrhea/vomiting. Labs looked good except WBC and ALT/AST were high. She's now on Flagyl as well. I just want my baby better.
05-06-2017, 08:08 AM   #44
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Really sorry to hear she is struggling so much. Hope they can get her feeling better soon.
05-06-2017, 09:41 AM   #45
pdx
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Really hope she's feeling better today.
05-06-2017, 12:23 PM   #46
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We want her better too. I'm sorry. I hope the Flagyl works quickly. Sending support to you both.
05-06-2017, 12:24 PM   #47
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We want her better too. I'm sorry. I hope the Flagyl works quickly. Sending support to you both.
Agree

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-15-2017, 06:10 PM   #48
DanceMom
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A is feeling much better! Flagyl just works so well for her! She had her infusion today and has gained 3 lbs in the last 2 weeks. Very happy with that! She took a little time off dance and all headaches/stomachaches are gone. We're waiting on insurance to get an ultrasound of the inflammation on her ribs. Hopefully that will provide answers and not more questions. She's been in pain with them since September. Just happy things are turning around! Oh, and IgG is down to 871 so that's a bummer. Could be from her GI flare, or because we've increased her fat intake. Or maybe it's just a blip. Fingers crossed next month is better!
05-16-2017, 11:15 AM   #49
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05-18-2017, 09:18 PM   #50
izzi'smom
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Dd had a good experience with tacrolimus. Details here if you didn't read already! http://www.crohnsforum.com/showthread.php?t=58975
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
05-20-2017, 08:05 PM   #51
DanceMom
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Bizarre new symptom....

Immediately after eating, even a tiny amount, A becomes very bloated. She normally has a very flat stomach with very defined abs, but after she eats she looks pregnant. No pain. No excessive gas. Not constipated. Bloating goes away after a few hours.

Any ideas what's causing this?
05-20-2017, 08:08 PM   #52
Maya142
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It's common with Gastroparesis. Does she have any nausea after eating?
05-20-2017, 08:13 PM   #53
DanceMom
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It's common with Gastroparesis. Does she have any nausea after eating?
No. She feels fine.
05-20-2017, 08:15 PM   #54
Maya142
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Hmmm...is it with all foods or specific kinds of food? Food with a lot of fiber (such as veggies for example) can cause bloating even in people with normal gastric emptying...

Is she on any new meds? Some antibiotics can also cause bloating.
05-20-2017, 08:16 PM   #55
my little penguin
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I would assume gastroparesis as well


Does her doc let her take gas X ?
05-20-2017, 08:20 PM   #56
DanceMom
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Seems to be all food. A few bites and her stomach just starts expanding. It's bizarre. She's been on Flagyl a few weeks. Periactin too. This bloating started a few days ago. Excessive bruising too (platelets are low normal). She has a bruise the size of a baseball on her calf with no known cause. It takes up almost her whole calf.
05-20-2017, 08:24 PM   #57
Maya142
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I'd check with your GI. I wonder if it could be this:

Small bowel bacterial overgrowth

Small bowel bacterial overgrowth is a condition in which very large numbers of bacteria grow in the small intestine.

Causes
Most of the time, the small intestine does not have a high number of bacteria. Excess bacteria in the small intestine may use up the nutrients needed by the body. As a result, a person may become malnourished.

The breakdown of nutrients by the excess bacteria can also damage the lining of the small intestine. This can make it even harder for the body to absorb nutrients.

Conditions that can lead to overgrowth of bacteria in the small intestine include:

Complications of diseases or surgery that create pouches or blockages in the small intestine. Crohn disease is one of these conditions.
Diseases that lead to movement problems in the small bowel, such as diabetes and scleroderma.
Immunodeficiency such as AIDS or immunoglobulin deficiency.
Short bowel syndrome caused by surgical removal of the small intestine.
Small bowel diverticulosis, in which small sacs occur in the inner lining of the intestine. These sacs allow too many bacteria to grow. These sacs are much more common in the large bowel.
Surgical procedures that create a loop of small intestine where excess bacteria can grow. An example is a Billroth II type of stomach removal (gastrectomy).
Some cases of irritable bowel syndrome (IBS).

Symptoms

The most common symptoms are:

Abdominal fullness
Abdominal pain and cramps
Bloating
Diarrhea (usually watery)
Gassiness

Other symptoms may include:

Fatty stool
Weight loss
05-26-2017, 06:28 PM   #58
Farmwife
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Ditto to what Kim said. The bloating sounds familiar to over growth.
Specially with antibiotics that she uses.
Is her calf, Erthema Nodosum . Grace had one fill a large area. Basically, it was a bunch of small ones the popped up together.
06-08-2017, 10:22 PM   #59
DanceMom
Senior Member
Quick update....

A has gained 10 lbs this month! We're cutting the Periactin to every other day. Unfortunately the EN have flared again and she has another UTI. Third one this year. UTIs always start a downward spiral. We leave for vacation tomorrow and her recital is next week...so prayers and positive thoughts appreciated!
06-08-2017, 10:24 PM   #60
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