Crohn's Disease Forum » Parents of Kids with IBD » Where we are now and how freaked I am


 
02-01-2017, 05:39 AM   #61
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Wow. I really don't know how to say how much I feel for you. One avenue is to have your kids tested properly for Celiac, which could be involved. Dr Alessio Fassano at Massachusetts General Hospital is a world wide expert, and has helped thousands of children and accepts patients.

http://www.massgeneral.org/doctors/doctor.aspx?id=19184
02-01-2017, 06:56 AM   #62
CarolinAlaska
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This sounds so much like what we are going through. The new doctor we are seeing suggested EDS as a possible diagnosis for Caitlyn due to her unremitting stomach pain.
Did they do biopsies?
Yes, they did. Only one was abnormal and she said a certain percentage of normal people had that finding in tht location. Unfortunately neither the scopes nor the pill cam visualized the terminal ileum where the pain mostly localizes.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-01-2017, 07:09 AM   #63
CarolinAlaska
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Remind me, what are J's symptoms? Has she ever been tested for Gastroparesis? M also had pain that got much worse with eating and so she lost a lot of weight...

If it's EDS, is there anything they can do for the pain? Have you considered seeing pain management? Many children's hospitals now have pediatric pain management clinics.
She has constant right lower quadrant pain that worsens with cramping, etc when she eats. She has had diarrhea most of her life but seems to have one or two soft stools now. It is rare to have nausea. Lately she has been very fatigued, running low BPs with tachycardia. She lost about 10-15 lbs in past several months and weighs 113-116, @ 5'9 3/4" tall. She is seeing a psychologist who specializes in kids with chronic health issues and pain. We've never seen a geneticist, but rheumy diagnosed her with hypermobility syndrome a year ago and last summer was diagnosed with postural tachycardia. When she was checked into neurologist last week her BP was 70/40. We are under care of cardiologist for that.
02-01-2017, 07:19 AM   #64
CarolinAlaska
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I can say Ds had severe belly pain similar to Jae for two spring /summers
For him it was food intolerance (chicken beef lots of veggies milk and gluten plus more
AND gastroparesis)
It took about a year of first going formula only then slowly adding one food at a time
Eliminating most process foods ,emulsifiers additives etc...
And sticking to Whole Foods but again we trial one food at a time
Avoiding skins ,beans ,high fiber

He know has a decent diet ,gastroparesis meds and lots of exercise which helped a lot

Second the look at gastroparesis very common with eds
And amplified pain clinic (we did not like regular pain management)
Have they filled out abdominal migraines ?

Good luck
To be honest, all they ever do with GI is scopes. They only ever look at her through IBD glasses. I have had her tested for allergies. She has a very limited diet that she'll eat due to pain, which mostly consists of GF mac and cheese, rice and potatoes. She eat a few well cooked veggies like carrots in a stew and eats most meats.

No mention of abdominal migraines or gastroparesis.
02-01-2017, 09:35 PM   #65
kimmidwife
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It upsets me that they didn't see her terminal ileum that is my daughters biggest trouble spot.
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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.
02-01-2017, 09:44 PM   #66
Maya142
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I wish they had been able to see her TI too - especially since her pain is localized there.

A pain management specialist might be worth seeing if the pain is what is impacting her quality of life most. There are medications used for chronic pain (I don't mean opioids) that may help. My daughter has tried several of them.
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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
02-02-2017, 10:18 AM   #67
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I was in a really bad flare this summer with rectal/anal pain and mesalamine enemas, while a pretty uncomfortable process, did help me for a little while and you kind of get used to doing them.

I was living in Oregon temporarily at the time and they have legal recreational cannabis there. I was curious about it as well so I did try a few products out to see if I would want to get a medical card when I got back home, especially CBD products. CBD is the part of cannabis that is therapeutic and non-psychoactive. So while THC is what gets you high, CBD is more of a physical effect. I ended up liking edibles that were high in CBD with a small amount of THC the most. They made me feel happier, hungrier, and made some of the pain go away. To be clear though, I was using this as a method of symptom relief, in addition to my regular treatment and medication from a GI doctor. I have talked to my GI doctor about this as well, and they agree/feel that the research doesn't support cannabis as a treatment for the underlying issues of Crohn's (as in curing it, etc.) but that it can be helpful for symptoms and that is really what I wanted as I was suffering a lot while waiting for other treatments to hopefully help me.

If you are still considering cannabis I think it's worth it to look into, especially CBD rather than THC. They make tons of different products now, like tinctures, CBD oil, edibles, where you don't have to smoke or inhale anything and you don't have to get high from it either. It sounds like a lot of the problems your daughter is having are ones that I have struggled with myself, I wish her the best.
02-02-2017, 05:53 PM   #68
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Sorry, but what is EDS?
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02-03-2017, 05:24 AM   #69
CarolinAlaska
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Sorry, but what is EDS?
Ehlers-Danlos Syndrome
11-30-2017, 03:31 PM   #70
CarolinAlaska
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Here's an update on Jae, 18 years old. I think this particular past thread is the most appropriate because her health is so frustrating!

This past spring she was diagnosed officially with EDS. She also so a pelvic pain specialist who sent her to pelvic physical therapy. That was wonderful. She seemed to make good progress and was having pain free times. That lasted until August when Jae went back to school. At that time she seemed to be doing better than she had in a long time.

Jae's health went down the drain after about 6 weeks. She started having seizures again, and following a med change more pain and couldn't eat and lost weight down to 106 lbs again. Meanwhile her WBC count kept going down and so her 6MP kept being reduced until the GI felt she couldn't reduce it anymore and took her off of it altogether the week before Thanksgiving. At that time she was put back on enteral nutrition. She seems to be gaining weight and today actually reported no pain for once in a very long time. She is on prednisone too (5 mg daily). Pred does seem to help. Her seizures are not in control, but she has found a medication she tolerates pretty well and seizures seem to be improving... that verdict is still out. The seizure card is always the black widow in our hand. When other things get better, the seizure monster rears her ugly head and everything else goes topsy turvy while we try to sort it all out.

Today the GI's nurse called and gave us the name of a doctor who is supposed to be a specialist of motility disorders for EDS. He's in Columbus, OH. Anyone heard of him - Miguel Saps? I'm not sure if Jae has a motility disorder or whether it would be worth our time to call him. It is very far away from us here in north central Illinois. Does anyone have a doctor they love who treats their kid with EDS GI issues? Or adult? Jae is 18 now. She could go either way.
11-30-2017, 04:26 PM   #71
pdx
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Thanks for the update, Carol--it's nice to see you here again. Sorry that Jae's still having a hard time, and I really hope that the EEN continues to help. I was happy to read your comment on another thread about Jae putting in her NG tube each night; that's so great that she's able to do that.

Is her GI considering any other Crohn's meds now that she's off imuran (eg biologics?).
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
11-30-2017, 04:52 PM   #72
Maya142
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Nationwide Children's in Ohio is supposed to be the BEST for motility disorders. We have not been there, but we have been told really good things about it. We were going to make the trip out there but then it was pretty clear my daughter just needed a tube and there was no way to get around it, so we didn't go.

A regular GI should be able to treat and order tests for Gastroparesis though - you don't need to see a motility specialist necessarily. M's regular GI treats her Gastroparesis and diagnosed it with a gastric emptying test. Most Children's hospitals do gastric emptying tests. If you need more specialized testing then a trip to Nationwide would make sense - for example, if her gastric emptying test is normal.

Gastroparesis is pretty common with EDS. My daughter has met several kids with EDS at the Juvenile Arthritis Conference and many of them also had Gastroparesis - one even had a GJ tube.

How is she tolerating the NG tube? Really glad she is getting tube feeds and gaining weight!! Just getting enough nourishment can really make a BIG difference.

Are they planning to scope and do a pillcam again after she has been off 6MP for a while?
11-30-2017, 06:10 PM   #73
CarolinAlaska
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Is her GI considering any other Crohn's meds now that she's off imuran (eg biologics?).
I don't know. She mentioned re-evaluating in 3 months.
11-30-2017, 06:15 PM   #74
CarolinAlaska
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Nationwide Children's in Ohio is supposed to be the BEST for motility disorders.
A regular GI should be able to treat and order tests for Gastroparesis though - you don't need to see a motility specialist necessarily. M's regular GI treats her Gastroparesis and diagnosed it with a gastric emptying test. Most Children's hospitals do gastric emptying tests. If you need more specialized testing then a trip to Nationwide would make sense - for example, if her gastric emptying test is normal.

Gastroparesis is pretty common with EDS. My daughter has met several kids with EDS at the Juvenile Arthritis Conference and many of them also had Gastroparesis - one even had a GJ tube.

How is she tolerating the NG tube? Really glad she is getting tube feeds and gaining weight!! Just getting enough nourishment can really make a BIG difference.

Are they planning to scope and do a pillcam again after she has been off 6MP for a while?
Is Dr Saps at Nationwide Children's? Is Nationwide Children's in Columbus? Her GI doesn't seem to want to order the test, but wants to refer her to someone who knows more about kids with EDS.

She has had a lot of heartburn with her NG tube. Otherwise she seems to mostly tolerate it. The heartburn is better with Prilosec OTC and ranitidine.

She didn't mention scopes, just that we would take a "holiday" for 3 months and I think they want her to flare to prove that she has crohn's, but they have her on low dose prednisone, so it is confusing.
11-30-2017, 06:27 PM   #75
Maya142
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Yes, I believe he is at Nationwide Children's. It might take a while to get an appt. there, so if you do want to make the trip there, I'd call ASAP. In our experience it can take a couple months to get a second opinion appt.

Her GI's plan makes no sense to me. I wonder if you need to get a second opinion closer to home - so you can switch GIs if necessary. It just doesn't make sense to pull 6MP and add Pred at the same time. And J's MRE showed inflammation - I don't understand why she has to "prove" she has Crohn's.

I understand stopping the 6MP since it lowered her WBC. But given that her MRE showed inflammation, they should have put her on a new maintenance med - Methotrexate would be one option and Remicade another.

Just hate that she has to suffer like this.

I'm really glad she is tolerating the NG tube feeds. It doesn't necessarily mean that she does not have Gastroparesis though - many kids with Gastroparesis are able to tolerate liquids through their stomach. M couldn't, she would throw up even liquids, but she has pretty bad Gastroparesis.

Heartburn is common with NG tube feeds unfortunately .
11-30-2017, 07:09 PM   #76
my little penguin
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^^^^ yeah to all of that
Ds has normal emptying on liquids so formula only is easy
Solids are tricky
Ds regular Gi also treats his Crohns and gastroparesis

Pulling meds for three months
But adding pred
Makes no sense at all
If itís not Crohns then can the GI explain the inflammation on the MRE
I would ask for an answer

Also if she is EEN then your treating Crohns
So long as she is in it
She shouldnít flare
Again
Very confusing to use not flaring while on een.
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11-30-2017, 09:29 PM   #77
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Remind me, has she had immune testing? A responds very well to Prednisone and Flagyl. It treats her minor acute inflammation well. Cellcept and IVIG help keep her stable long term. If it isn't Crohn's, that doesn't mean there's nothing wrong. Just means it isn't Crohn's. I hope you have a better plan soon.
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Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
11-30-2017, 11:16 PM   #78
crohnsinct
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Wait! What?! She was dx'd and treated for Crohns for years and now they are pulling her meds and questioning her dx? The kid is in pain and losing weight. In what universe does that mean we should pull meds and let her continue to go south? I guess the prednisone will help and if she is formula only that also but really? 3 months?

Sorry to be such a downer. I am just so upset for you and her.

Are you near Chicago? I think you might be. There is an AMAZING adult GI there if you are interested.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-01-2017, 07:51 AM   #79
CarolinAlaska
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Wait! What?! She was dx'd and treated for Crohns for years and now they are pulling her meds and questioning her dx? The kid is in pain and losing weight. In what universe does that mean we should pull meds and let her continue to go south? I guess the prednisone will help and if she is formula only that also but really? 3 months?

Sorry to be such a downer. I am just so upset for you and her.

Are you near Chicago? I think you might be. There is an AMAZING adult GI there if you are interested.
Yes! Please tell me who!
12-01-2017, 08:01 AM   #80
CarolinAlaska
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Just to clarify, she is not doing enteral nutrition exclusively. She can eat. It isn't being used as a treatment for crohn's. It is just feeding her because she can't eat enough to sustain her weight.
12-01-2017, 08:59 AM   #81
Maya142
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If she's not doing EEN and she's only on 5 mg Pred, she's probably going to flare . Poor kiddo. I hope you are able to get in with an adult GI. This is just crazy - J needs a break.

Sending big hugs to J .
12-01-2017, 09:29 AM   #82
my little penguin
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Yikes!!!
Hope you get in soon to see another GI
Wow 😮
12-01-2017, 10:53 AM   #83
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I hate crohns, I hate jia but I hate eds even more.

Grace's GI is basically doing the same.
Questioning ibd dx because it's not clear cut ibd.
But she agrees it is.

Matter of fact she told us we can wait a year to meet with her, since she's doing well.
Which is great but.......
The GI said also the eds experts is the best to head her care.

Her pain management doctor is an eds expert (we've been told by many docs he's the best).
Didn't know it when we started going to him praise the Lord it worked out that way.
He heads the whole pediatric clinic and deals with a lot of eds'ers.
He's also quite smitten with Grace. Lol, Grace wants to go back to inpatient again.

He's at a renounced rehab hospital.
If your interested pm and I'll tell you the info.


Grace also isn't full time EEN. I monitor her weight and increase or decrease her formula depending what her numbers are.
She's gone 3 or 4 weeks without formula but always had to go back on it.
Her GI said it doesn't sound like gastroparesis. So for now we live day by day.
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I'm mom to............... Little Farm Girl 9 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 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
12-01-2017, 12:37 PM   #84
my little penguin
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Farmwife you will have a tough time proving ibd since she requires biologics for JIA
So your always treating ibd even if they donít plan too

I think when your kiddo doesnít fit the one mold for ibd
Docs are unsure what to do
Itís good to keep an eye out for signs of something else
But some need to realize there are lots of kids who donít fit in the one pretty box they studied for ibd
Especially since most docs purposely EXCLUDE kids who donít fit the mold
So as to NOT mess up their study (I kid you not they excluded Ds for this very reason)

Which makes you question how many kids out there donít fit the mold
I think the number is much higher than most GI like to admit
12-01-2017, 02:32 PM   #85
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Mlp, your exactly right!
I've been told they (Mayo GI, past and currant Gi) believe its a subtype for Crohn's.
That's why the microscopic/intermediate ibd dx. However, you try to explain to a new doc the in-between dx.

Carol,
I heard from one Gi with eds knowledge say they are trying to come up with guidelines to define ibd that has to do with eds.
That was a couple years ago.
12-01-2017, 02:40 PM   #86
my little penguin
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You tell the new doc itís a ďworking dx of Crohns ď
Thatsthere is enough objective evidence for a Crohns dx
12-02-2017, 10:24 PM   #87
CarolinAlaska
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Remind me, has she had immune testing? A responds very well to Prednisone and Flagyl. It treats her minor acute inflammation well. Cellcept and IVIG help keep her stable long term. If it isn't Crohn's, that doesn't mean there's nothing wrong. Just means it isn't Crohn's. I hope you have a better plan soon.
Yes, she had immune testing with an allergist. It seemed to be fine.
12-05-2017, 05:59 PM   #88
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Carolin,
I was off for a few days and just getting back to this. We went to Columbus Ohio to see Dr. DiLorenzo at Nationwide he was really great.
I recommend it.
We are also dealing with both EDS and IBD.
01-23-2018, 06:20 PM   #89
CarolinAlaska
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A quick update on J. She is now officially off of all pred and 6MP. No maintenance meds at all. Yeah, I know, it's asking for trouble, but it is directed by her GI. With her EDS diagnosis and "clean" scopes and normal labs, the IBD team doesn't believe she ever had crohn's. Yes, she has been treated for the past 5 years. Yes, the 6MP helped her tremendously. Her fecal calprotectin went from like 900 to <50 within 6 months and has stayed there.

Other than not having an appetite and her weight slowly dropping off again, and a one week episode of bad abdominal pain (about when her period should have been, but didn't have her period), she's doing okay. She is doing PT 3 days a week for her EDS. She did a month of NG tube feeds but then the back of her nose got really sore. Now I can get her to drink 2-3 bottles of Ensure to supplement when she isn't eating much. When she was in more pain I talked her into dropping the tube for 3 days and giving her full night feeds. I just hope they don't want me to send the pump back soon! It is my Jack in the pocket...

Jae's seizures have slowed down to once every 1-3 weeks. I do think the antiseizure med (Dilantin) is part, or maybe all?, of her lack of appetite issue, but she isn't as depressed so I think we'll just have to deal with that.

I just got some CBC oil, and I think we're going to start trying it tonight. Fingers crossed and lots of prayers! If it could just do half of what everyone says it can do, we'd be sitting really pretty. I've been debating it for a long time. We have a window now between when we see a new GI motility specialist in April, so why not?
01-23-2018, 07:43 PM   #90
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Wait, so she had a FCP of 900 and she had a pillcam that showed Crohn's right? AND she's had scopes show inflammation recently? In her colon?

But she doesn't have Crohn's?!

That seems pretty crazy to me. I suppose eventually she will flare and they will have to treat it but I would want a second opinion at a big IBD center.

The weight loss is concerning. Has anyone talked about a G tube? I suppose they will if she is diagnosed with a motility issue.

A G tube/GJ tube was MUCH easier on my daughter than an NJ tube, which made her nose and throat sore. It is a surgery, but a minor one. Couple of days in the hospital. The Mickey button is small enough that no one would have to know that she has it.

I would talk to your GI team about a G tube because eventually your home health company will want the pump back!

Sending hugs - I hope the CBD oil helps!! It is supposed to help with appetite and nausea.
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