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03-23-2013, 03:51 AM   #1
Sascot
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Update

Hi, haven't really updated for a while since things are pretty much ticking along. Andrew has only 2 more weekly blood tests thankfully, although they are getting blood no problem - 29 seconds has been one nurse's record .
Apart from still feeling tired Andrew has been fine and his liver function is perfectly in range this time, so fingers crossed it stays that way!
Last time we had a blood test the nurse used her "new toy" called AccuVein. It was awesome!! Little red square of light shines on the arm and shows all the veins - which are bigger, which direction they go in. Andrew and I thought it was so cool, Andrew wanted one for his birthday
Amy is also doing well, no pain at all and I am incredibly thankful. Apparently her appendix pathology came back with mild inflammation "which is unlikely to be the cause of her symptoms". However, it's gone, pains gone - mom is happy!!
03-23-2013, 03:55 AM   #2
DustyKat
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Thanks for the update Sascot!

It is so fab to hear that they are both doing well. Sending loads of luck and well wishes that all stays settled for them both...



Dusty. xxx
03-23-2013, 06:18 AM   #3
upsetmom
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Thanks for the update.
I'm glad things are going well..
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Daughter dx CD March2012...
(aged 14)

Currently on:
Remicade
125mg Imuran
3000mg Pentasa
600mg Calcium


Dx Premature Ovarian Failure 2014
On Estrogen and Provera


03-23-2013, 06:32 AM   #4
Farmwife
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I'm glad for the update. That's right about Amy, what will be, will be.
Don't think on it. Just enjoy her good health and you son's improving health.

HUGS
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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
03-23-2013, 08:33 AM   #5
Tesscorm
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Great news Sascot!!! I so happy to hear both are doing well!
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Tess, mom to S, 22
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
03-23-2013, 08:41 AM   #6
polly13
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Great to hear they Are doing so well

Last edited by polly13; 04-03-2013 at 04:31 AM.
03-23-2013, 09:06 AM   #7
Clash
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Sounds like a great report! I sure do love to hear those, I know you do too! Thanks for the update!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-23-2013, 12:26 PM   #8
CarolinAlaska
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Thanks for the positive update. Those are always great to read. That accuvein sounds neat.
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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.
03-23-2013, 02:09 PM   #9
Niks
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Great news!! So good to hear that they are both doing so well. Everything crossed that it continues xxx

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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
03-23-2013, 03:37 PM   #10
Marni's mom
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I'm going to have to find one of those gadgets!
03-23-2013, 03:42 PM   #11
Twiggy930
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Great news for both your kids! So happy to hear it!
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
03-24-2013, 10:30 PM   #12
jmckinley
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Yay! Thanks for the update. So glad things are going well!
03-25-2013, 08:18 AM   #13
QueenGothel
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You just made my day! Thanks!
03-25-2013, 09:46 AM   #14
kimmidwife
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Glad to hear good news! That accuvein sounds awesome!
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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.
04-01-2013, 01:53 AM   #15
Marni's mom
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Well, I received a response to my email to the Adult GI who did Marni's endscopy on Tuesday. He said the biopsy results aren't in yet. Also, his scheduler would be calling me to schedule the other half of the telescoping endoscopy next week, not this week as we planned.

So, for now, no answers.

At the hospital, Marni was on Morphine one of the weeks and hydrocodone last week every four hours. They stretched it out to every six hours to get her ready to wean off once she was home. Either way, they were giving it to her on a round the clock schedule. Once home, we tend to get off the schedule and try to only use it when she really needs it.

Unfortunately, this system isn't working, and she is experiencing episodes of really bad pain. Tonight was like that, and when I did give her the hydrocodone, it didn't work. Neither did the sleeping pill that was prescribed. She suffered until she fell asleep from pure exhaustion.

This really sucks. This is the first time she's been in pain for this long on a continuous basis, and it's been almost three months. I'm coming to the end of my rope as far as coping, knowing what to do, or helping her. She was on sulfasalazine and 6MP for the longest time, but it stopped working. Remicade didn't work, and now it's not looking like Humira and Methotrexate are helping either. I'm so tired of this.

How many of your kids are getting big pimple-like bumps on their bodies? Marni gets these off and on, but lately, she's got a bunch of them. There are about seven or eight on her behind all around the top of her crack, and she has them on her thighs too. They get big and full of pus, and then open and drain on their own. They are painful and gross.

I hate seeing her suffer like this.

I'm not sure if I mentioned previously, but I had the 504 meeting this past Thursday with the school and district officials. It looks like the only thing left is a letter from her doctor and she will get to have a homebound teacher come to our house twice a week to teach her what her teacher at school is teaching her class. When she feels well enough to go to school, she can do that, as long as she sees the homebound teacher twice a week. When she can't go to school, she will not be counted absent. She will only be counted absent when she misses a session with the homebount teacher. So, at worst, she can only count as having two absences per week instead of five. I think this is the best of both worlds, and pretty much what I was hoping could happen.

How is everyone else doing these days? I feel like I've been gone from the forum forever, but I'm still so mentally tired all the time. This is really getting me down in the form of anxiety and depression and I'm thinking about going back on meds for a while. How are all my comrades in arms doing in their own situations lately? Keep me in the loop!
04-01-2013, 05:08 AM   #16
Farmwife
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Grace gets those sores on her upper legs. Hers don't open up but I was told with disease progression they will. I forget what their call? Tagging DustyKat or MLP or anyone smarter than myself.
04-01-2013, 05:19 AM   #17
Niks
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Poor Marni! And poor you. (((hugs)))

It is the hardest thing seeing your child suffer, especially when nothing seems to be helping. We did the same with Jaime when she came out of hospital and started easing off on the pain relief. Was not a good idea, so now she takes it regularly. If she does forget though it is so much harder to get on top of it!

Having a home teacher sounds like a really good plan, I really hope you can get this organised!

Good luck, thinking of you xxx
04-01-2013, 05:29 AM   #18
DustyKat
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Are you thinking of Pyoderma Gangrenosum Farmwife?

Erythema Nodosum are inflamed painful nodules that most commonly occur on the lower limbs but can occur on the arms and elsewhere, they do not break open.

The lesions of Pyoderma Gangrenosum are red/blue in colour, pus filled and do break open.

Dusty. xxx
04-01-2013, 06:31 AM   #19
Farmwife
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Are you thinking of Pyoderma Gangrenosum Farmwife?

Erythema Nodosum are inflamed painful nodules that most commonly occur on the lower limbs but can occur on the arms and elsewhere, they do not break open.

The lesions of Pyoderma Gangrenosum are red/blue in colour, pus filled and do break open.

Dusty. xxx
Thanks DustyKat. The Pyoderma was the one......I think?

Marni's mom does that sound like it?
04-01-2013, 10:47 AM   #20
Jmrogers4
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Sascot,
Missed this somehow, Great news, glad they are doing well.

Marni's mom,
Wish we could come give you a big hug and I hope things turn around for Marni soon.
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Jacqui

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
04-01-2013, 11:27 AM   #21
Marni's mom
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Are you thinking of Pyoderma Gangrenosum Farmwife?

Erythema Nodosum are inflamed painful nodules that most commonly occur on the lower limbs but can occur on the arms and elsewhere, they do not break open.

The lesions of Pyoderma Gangrenosum are red/blue in colour, pus filled and do break open.

Dusty. xxx
Your description of E.N. is closer to what she has. They are red, and get redder to where they start to look blue or purple. However, they are more like giant pimples. They get white or greenish heads on them. She puts a bandaid over them because they hurt when they are rubbed, and when they get big enough, they pop and pus and blood comes out which she worries about getting all over. Not to mention it totally grosses her out. Because of the pus, it's obviously an infection, which is most likely because she's immunosupressed. I took her to a dermatologist a few months ago, but there weren't any for the doctor to see at that time, wouldn't you know it!

What else really gross can we talke about now? We've covered pus filled giant pimples and regularly discuss poop.....is there anything left? :-)
04-01-2013, 12:32 PM   #22
Sascot
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Could also be a case of molluscum contagiosum. It's quite common in kids, Andrew had it for about a year. Comes up as spots, turns into blisters then pops and releases yucky stuff. Andrew had them in between his legs and found them painful, especially as his legs rubbed when walking. The docs just said to leave it, but ended up going to a dermatologist. It is contagious so make sure she has separate towels if it is that.
Poor Andrew has got his first bad cold since starting his 6mp. He is feeling generally miserable!
04-02-2013, 06:02 AM   #23
Dexky
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You might try an anti-biotic ointment on them Marni's Mom. I used to get similar sores on my waist line and buttocks from clothing irritation(I believe, since I am a driver). I began using a triple antibiotic gel daily and they completely cleared up. I don't have IBD so obviously if it's related to that the tripleB may not help.

I hope things get better for her soon…for both your sakes!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
04-02-2013, 08:10 AM   #24
Marni's mom
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We've already gone through the molusca (warts) thing. This is different. My friend suggested it might be staff, but I vaguely remember them being cultured once before and it wasn't...I think. My brain is fried.
04-03-2013, 03:39 AM   #25
izzi'smom
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Hoping it clears up, but waiting for someone to jump on this question lol!
"What else really gross can we talke about now? We've covered pus filled giant pimples and regularly discuss poop.....is there anything left? :-) "
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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.
04-03-2013, 04:18 PM   #26
Sascot
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Well, sorry I haven't been on the forum much - it was Andrew's birthday today!! Can't believe he's 14 years old now.
We are off on holiday in a days time, so won't be round much for just over a week. Hope all those suffering feel a bit better soon!
04-03-2013, 04:21 PM   #27
Jmrogers4
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Happy 14th Birthday Andrew!
Hope you have a fantastic holiday!
04-03-2013, 04:24 PM   #28
Farmwife
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Happy birthday to Andrew!
04-03-2013, 04:35 PM   #29
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Happy Birthday Andrew!! Hope you have a fabulous birthday and holiday!!!

04-03-2013, 05:45 PM   #30
Marni's mom
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Have a great Birthday with Andrew and a fun vacation, as we say on this side of the pond!
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