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Crohn's Disease Forum » Parents of Kids with IBD » Belayted introduction


05-30-2013, 01:04 PM   #1
killcolitis
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Belayted introduction

Hi All,
I've been reading this board for a while and have learned a lot. I've even done some "drive by" postings here and there but I've not introduced myself - I still find it very difficult and exhausting to think and write about my daughter's history.
She was diagnosed with UC almost four years ago (pancolitis) and is starting remicade today. She's pred dependent and has been on (even at low doses) more than off in these years. She's intolerant to imuran/6mp because she can not metabolize them correctly and has had seriously high liver enzymes as a result.
Her QOL is seriously compromised and she's missed so much school and so much of her childhood. It has been a long, hard journey. To add to this, this past winter she started breaking out in what the allergist has decided to call "chronic ideopathic urticaria" (though he didn't test much - we are seeing a new set of allergists next week).
If Remi fails, colectomy is next though i worry about a pouch on her now very reactive skin.
Also, we've tried every single alternative treatment out there almost - 5 chinese med practitioners, ayurveda, homeopathy, daily fecal transplants for three months, homeopathy (not that I'm a believer but desperate times...), chiropractic (see homeopathy), scd/gaps/paleo diet (worked miraculously and then just stopped), ldn, naturopathy and a zillion supplements, antibiotics (not alternative but sort of, as rxed by her GI) and the list goes on.
I'd love to hear any success from those whose children flared for a very long period but the found remission. Anyone?
05-30-2013, 01:37 PM   #2
Tesscorm
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So sorry to hear that your little girl is still not in remission!

I'm going to tag in izzi'smom and QueenGothel - both have young daughters who had difficulty finding remission. Both are doing very well now - izzi is on tacrilomus (sp???) and QueenGothel's daughter is doing well after surgery.

Just on the remicade... I know any new med is scary but my son started on remicade in February - he's had his three loading doses and will be having his first 'regular' infusion next week. So far, he's had no problems with the remicade - no reactions, no fatigue, etc.

I hope remicade is what your daughter needs and that she's soon in remission!!!
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-30-2013, 01:44 PM   #3
Farmwife
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Thanks for the introduction. Wow, you've both been through a lot. Your story sounds a bit like ours. We've been and have been doing a lot of "natural" stuff but nothing that last. Right now Grace is on LDN. We hope this works for her. Grace also has a whole host of allergy problems. So has your girl been tested for any allergy yet? Sorry, I can't answer your last question as I don't think my Grace has ever had true remission yet.
Welcome officially aboard.
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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
05-30-2013, 09:48 PM   #4
killcolitis
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I hope the LDN works for you guys. It really did nothing at all for us, and we've tried several formulations. Oh well, it's certainly worth a shot.
We did do some RAST testing a few years ago and now we're waiting on a referral to a new allergist who I hope will be more useful than the last. She does have environmental allergies, but I'd like to see which and do food testing too. The previous allergist basically said it was a waste of time and her hives are "ideopathic" and chronic. How he knows without doing pretty much anything at all is beyond me (did some thyroid testing and that's basically it!). What type of testing do you suggest?
05-31-2013, 05:08 AM   #5
Dexky
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I hope the remi works for her. Maybe the skin issues are related to her ibd and that will settle as well….we can all hope
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05-31-2013, 08:01 AM   #6
Clash
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Welcome killcolitis, I do hope you get some answers from the new allergist and that the Remicade gets your daughter into remission.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
05-31-2013, 09:01 AM   #7
Tesscorm
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I'm gonig to tag my little penguin - she may know about the allergy testing.
05-31-2013, 09:04 AM   #8
QueenGothel
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Hi KC, assuming by your name that you kid has UC and not Crohns. If this is the case I really hope the Remi helps, but I was told to pray because it is so rare that it helps UC and when it does it doesn't work forever or for very long. Sorry to give it to you so bluntly but that is how I prefer to be handled. If it doesn't help... You will know right away. We used it and it did help enough to get her healthy for colectomy. That with the Predisone slowed her bleeding down to where she gained some weight and strength before surgery. She was the healthiest right before her surgery when she had UC.

Surgery can be a very scary thing and I know because we have done it. My daugther Rowan has a J-pouch and is now almost a year post takedown. She is doing very well now. She had a lot of surgical complications that were abnormal. If you would like to read about her journey there is a link at the bottom of my signature. I just want to lend support and let you know that there is hope. Rowan now eats anything she wants within reason, she has no incontience issues, she has about 4 BMs a day and sleeps through most nights, is pain free and is currently med free beyond her supplements.

If you decide to do the colectomy and need support I created a group on FB and we have over 40 Parents of J-pouchers and they have posted their stories online there. Pease feel free to join it.

https://www.facebook.com/groups/ParentOfJPouchers/

For us, the Colectomy was in fact the cure. It saved my daugther life. She has responded great to it and is now a normal kid again.

I want to also warn you to not read too much on j-pouch.org because kids and adults are completely different. Rowans body has adapted very well to the new plumbing whereas there is a lot of horror stories on that site. Though I did go there from time to time I felt like I never really got the support I needed or that it was only the same few people responding to me. Hence why I created the other parents group. Though their illustrations are awesome and they have great diet advice there as well.

The most important part of the surgery is having a skilled surgeon to do the surgery. How many J-pouches have they done? Do they do a mucousectomy? Would you need or want a mucousectomy? (It was a requirement for my daugther, some don't do them as it is very complicated)

The skin sensitivity is actually very common and they do have barrier to put inbetween the adhesive and the skin. It helps some. I think that is the biggest complaint about the surgery is the time spent inbetween dealing with the ileostomy. Rowan does in fact have skin issues with certain types of surgical adhesives but she never got any reaction with the adhesives from the bags. When she had her epidural the adhesive on her back gave her a terrible chemical burn (looked like someone set a hot iron on her back), this is completely gone now thanks to Vit E Oil and daily applications after the fact. Since this is a worry I would try them out first before surgery as each companies adhesive is different. If you call them I am sure they will send you a sample of their adhesives so you can do an allergy test. The biggest companies are Hollister, Coloplast, Convatec, Nu Hope, and Dansac. To name a few.

I hope this information helps you and eases your mind about surgery. How I viewed it was... My kid has UC and is suffering we are going to try Remicade and use it as a bridge to get her healthy enough for surgery. Our intentions were never to use it long term regardless. I knew the surgery was inevitable, and in doing so she would never be "normal". But she is way more normal than she ever was with UC. And an altered life is better than no life at all stuggling with the pains and mental issues that come with battling severe UC.

Hugs to you, feel free to PM me if you ever need to.
05-31-2013, 09:26 AM   #9
rollinstone
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Hi kc, sending support, really hope things start gettin better for you and your daughter, I'm just curious, when you did SCD, how long did you do it for and how diligent were you in making sure your daughter didn't stray from the diet? If it worked well to begin with maybe you should get her back on it, I read in breaking the vicious cycle that some people tend to flare a few months in for no reason at all, this in turn gets people disheartened and they give up on the diet. Anyway, hugs for you and your daughter.
05-31-2013, 09:42 AM   #10
killcolitis
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Thanks all!
QueenGothel, I'll be in touch for sure! We had our first infusion yesterday so time will tell I suppose. We are staring surgery in the face and I hope we have the same results as you did. It's fantastic that she's doing so well. And, yes, by the way, my daughter has UC.

Joshuaaa, yeah I know the three month flare etc but for us, flaring on the scd/paleo always meant rounds of pred and it would just stop working. pred would get her back on track and then a few months later it would happen again. it was great when it worked but i can't really do that to her (it does have a big impact on a little kid, one which I was happy to face had it "healed" her, but it wasn't doing what it should have done). I do think it's well worth a shot though - in our case when it was working, she thrived on it but I made sure we had her on a LOT of healthy fats etc. I actually think it's a very healthy diet for most people, just hard to do with all of the social sacrifices etc it involves.
05-31-2013, 01:26 PM   #11
CarolinAlaska
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KC, I'm sorry your daughter has had such long difficult, unfruitful journey with her colitis so far. I'm praying for a good resolution soon.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
05-31-2013, 08:20 PM   #12
Farmwife
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I hope the LDN works for you guys. It really did nothing at all for us, and we've tried several formulations. Oh well, it's certainly worth a shot.
We did do some RAST testing a few years ago and now we're waiting on a referral to a new allergist who I hope will be more useful than the last. She does have environmental allergies, but I'd like to see which and do food testing too. The previous allergist basically said it was a waste of time and her hives are "ideopathic" and chronic. How he knows without doing pretty much anything at all is beyond me (did some thyroid testing and that's basically it!). What type of testing do you suggest?


Here's a explanation from webmd

Skin tests
A small amount of a suspected allergen is placed on or below the skin to see if a reaction develops. There are three types of skin tests:
Skin prick test. This test is done by placing a drop of a solution containing a possible allergen on the skin, and a series of scratches or needle pricks allows the solution to enter the skin. If the skin develops a red, raised itchy area (called a wheal), it usually means that the person is allergic to that allergen. This is called a positive reaction.
Intradermal test. During this test, a small amount of the allergen solution is injected into the skin. An intradermal allergy test may be done when a substance does not cause a reaction in the skin prick test but is still suspected as an allergen for that person. The intradermal test is more sensitive than the skin prick test but is more often positive in people who do not have symptoms to that allergen (false-positive test results).
Skin patch test. For a skin patch test, the allergen solution is placed on a pad that is taped to the skin for 24 to 72 hours. This test is used to detect a skin allergy called contact dermatitis.

Blood test
Allergy blood tests look for substances in the blood called antibodies. Blood tests are not as sensitive as skin tests but are often used for people who are not able to have skin tests.

The most common type of blood test used is the enzyme-linked immunosorbent assay (ELISA, EIA). It measures the blood level of a type of antibody (called immunoglobulin E, or IgE) that the body may make in response to certain allergens. IgE levels are often higher in people who have allergies or asthma.

Other lab testing methods, such as radioallergosorbent testing (RAST) or an immunoassay capture test (ImmunoCAP, UniCAP, or Pharmacia CAP), may be used to provide more information.


No allergy test is fool proof. Grace shows nothing in the RAST test but the skin prick test showed some reactions.

I think it's a good idea to get her tested.
I have bad hives to. I have to take meds to control it now.
05-31-2013, 08:34 PM   #13
ChampsMom
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So sorry to hear about your struggles... I pray the remi works wonders for your daughter...
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06-02-2013, 11:10 AM   #14
Jmrogers4
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Hope the Remi does the trick, please keep us updated on how it goes
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-02-2013, 11:37 AM   #15
killcolitis
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Thanks all! First infusions went okay with no side effects yet. We can only wait and see and hope. We're weaning pred slowly as. So stressful.

Farmwife - her skin off of anti histamines reacts to pretty much everything at the moment so skin testing is a no go. RAST, she's had that done in the past, will likely do it again but it's not reliable (as you mentioned in Grace's case). I'm thinking of trying some IGG4 testing through an alternative dr but again I've heard mixed things and I don't want to remove even more foods from her diet if not necessary. Has anyone done any alternative testing or have any thoughts? This is driving me a little nuts.
06-02-2013, 11:57 AM   #16
Farmwife
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Has she done fresh patch testing. It's done by applying a small amount of the food to the skin which it taped down and left on for a few days. Then you go back to the allergist and they see if they child has had a reaction. Grace has never done this but am willing to try.
06-02-2013, 04:15 PM   #17
my little penguin
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IgG testing does not show food allergies
Please see link above
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06-02-2013, 05:06 PM   #18
killcolitis
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Thanks MLP. I know it's for "sensitivities" as opposed to allergies. Some swear by it though I know it's not something most mainstream allergists even consider and would dismiss as quackery. But then some MD friends have suggested it to me (off the record) so I don't know? Has anyone tried IGG testing for themselves or their child?
06-02-2013, 06:57 PM   #19
Farmwife
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What is IGG?
06-02-2013, 08:47 PM   #20
my little penguin
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the problem is your body normally produces IgG so having a positive is not necessarily
a bad thing.
I would try simple food diary with what was eaten when and log symptoms for two weeks.
There is also FODMAP which helps some bur not others.
for us food was not really the issue. the right meds were the issue.
I know since even on EEN ds still had some symptoms.
06-04-2013, 06:59 PM   #21
killcolitis
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Well the allergist didn't do any testing and says it's chronic ideopathic urticaria likely secondary to the uncontrolled inflammation caused by UC. Didn't think it could be food related because it's not acute and doesn't worsen following any particular food. Feels it should get better once GI inflammation is controlled. This is the fifth allergist we've seen (most have said the same) and I've had her path reviewed. Does this make sense or is another opinion warranted - any thoughts?
06-04-2013, 07:16 PM   #22
Farmwife
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Yes, the inflammation can cause all sorts of problems with a person. Does she have a Dermatologist? Grace has one now. She also is having skin issues.

BTW my hives come from the environment. Mine are bad enough now I have to take an anti-histamines. Works for me.
06-04-2013, 07:24 PM   #23
killcolitis
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I do have a family friend whose a dermatologist and I've been harassing him - even dropped in on him last week at dinner time in a panic. Poor man. He agrees with Idopathic urticaria too. Both uc and urticaria run in his family too. I guess I'll stop second guessing for now (tonight?). We're using a mast cell stabilizer and a anti histamine which were working until this recent flare which correlated with the change of seasons. then it stopped? I guess we'll try another or increase dosage. She has dermographism.
06-04-2013, 08:26 PM   #24
my little penguin
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Allergy shots?
Full bucket theory
Too many things at once and system over load.
DS takes daily antihistamines , h1 /h2 blocker
Plus shots plus nasal / eye stuff
All to keep allergy stuff at bay .
Sometimes we are more effective than other times.
DS has dermographism and idiopathic urticaria as well as many many other allergy related things .

Good luck
06-05-2013, 05:43 AM   #25
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Unfortunately the Extra Intestinal Manifestations of IBD are far more common for those with large bowel involvement and when you break that down further there are some EIM's that have a quite a high incidence with UC.

I hope Remicade does the trick for your girl and with it the skin issues heal too. She surely could do with a break, and a long one at that, bless her.

Dusty. xxx
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06-05-2013, 02:51 PM   #26
killcolitis
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Thank you Dusty. I sure hope she gets a break soon. It's been a hard road.
MLP - how are the allergy shots working for you guys? It's something I'll probably look into soon. I'm actually thinking of trying helminths (I have hookworm and whipworm in my closet at the moment. I know, doesn't everyone? Bought it a while ago but it does elevate IGG/eos levels while a person's affected, I'm just worried it will do some longer term damage, though it doesn't seem like it does or can?)
Anyway, I guess her system is just totally haywire, it's been half her life with this disease badly controlled.
06-05-2013, 05:43 PM   #27
DustyKat
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Hey killcolitis,

My knowledge of helminthic therapy is every limited indeed. I don't know if you have seen the wiki article we have here, if not it has some good info and links contained within it:

http://www.crohnsforum.com/wiki/Helm...kworm-Whipworm

Dusty. xxx
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