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09-17-2013, 10:07 AM   #31
DanceMom
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I have big plans for tonight! They include a popsicle stick, tape, and a flashlight! Any guesses? lol

This will probably be followed by my funeral because A is going to kill me when she wakes up and discovers what I'm doing.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
09-17-2013, 02:48 PM   #32
Tesscorm
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Oh my!!! Hope it goes smoothly!
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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
09-17-2013, 05:06 PM   #33
Sascot
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Sounds like fun! Good luck with that
09-17-2013, 05:23 PM   #34
crohnsinct
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Oh no! BTDT!!! Good luck!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
09-17-2013, 05:31 PM   #35
Niks
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Good luck!!! xx
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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!
09-17-2013, 09:50 PM   #36
DanceMom
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Mission complete! No pinworms!
09-18-2013, 05:10 AM   #37
Dexky
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...so back on Flagyl??
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
09-18-2013, 05:44 AM   #38
crohnsinct
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Phew! Have them check for yeast and psoriasis.
09-18-2013, 08:32 AM   #39
DanceMom
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Well, he wants us to try the Preparation-H anti-itch cream so I put that on her before school. We'll see. I'll email him tonight to update and if it doesn't work then he's going to push labs up so we can develop a plan sooner. I'm learning that things are ever-changing with this disease!

Also, I'm noticing that this past week A has woken up with a stomachache and only eats a little breakfast (very unlike her). Typically she feels better an hour or so after getting to school. I think this correlates with taking the Prednisone in the morning and it needing time to kick in. Fridays (step-down days) she feels bad the whole day and progressively worse by night. Sadly, I think she has become steroid dependent and I'm unsure of how she'll do once off of them. Anyone else's kiddo struggle like this and then do okay once the taper was complete?
09-18-2013, 09:32 AM   #40
Mehita
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Maybe you just need to taper more slowly? Stretch it out over ten days instead of seven? DS is tapering now too and was at five days. We needed to extend it to every seven days.

FWIW, I can never get DS to eat breakfast even on good days. He says his stomach is still sleeping.

DS tapers okay, but in the last two years never gone longer than four months w/o another round of steroids. He's okay for that short period before it all starts up again (this was all prior to being on Aza).
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-18-2013, 09:53 AM   #41
DanceMom
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We are doing 5mg per week. GI wants her off ASAP because she has been on them since mid-May (so a little over 4 months). She did fairly well until we got to 15 mg, probably because prior to that the lowest she'd been at was 20 mg.

A typically eats 3 good meals and 1-2 snacks a day, when she's feeling well. Her not wanting to eat is a definite sign that something isn't right.
09-19-2013, 09:59 AM   #42
DanceMom
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Well, the anti-itch cream does help some. Not sure what the actual problem is but at least she's getting some relief.

She woke up with a headache this morning, as usual. I'm really afraid to see how tomorrow is when we move down to 10 mg of Prednisone. I really think her body relies on it to feel good at this point and she just isn't adjusting well to the taper.

Labs are scheduled for Monday morning so we'll get those results by mid-day Tuesday. I'm ridiculously anxious about this whole thing!
09-19-2013, 12:36 PM   #43
Mehita
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Do you have an outlet, DanceMom? Exercise? Crafts? Something to get your mind off things for an hour?
09-19-2013, 12:48 PM   #44
DanceMom
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I wish I had time for an outlet! lol After work it is either taking one child to dance or the other child to t-ball. Church on Wednesdays. My hubby works nights so it is up to me to do dinner, dishes, homework, nightly reading, etc. I suppose my "outlet" is watching trashy TV shows but lately I've been too tired at night to do that.

I think I'll breathe a little easier after Tuesday. Either way, good liver numbers or bad, we'll have a plan. Knowing what we're up against will give me some sort of comfort.
09-19-2013, 12:49 PM   #45
Tesscorm
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Wine, chocolates, firefighters...
09-19-2013, 02:27 PM   #46
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Have you tried the nystatin cream yet?

I read at bedtime - only time I get for me most of the time - even if I can't even read a full chapter before I zonk out.
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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.
09-20-2013, 03:57 AM   #47
DustyKat
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Thinking of you both DanceMom and sending loads of luck and well wishes for Tuesday.

Dusty. xxx
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09-21-2013, 07:51 AM   #48
DanceMom
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We survived Friday step-down day! She complained of a terrible sore throat and dull headache but Tylenol made her more comfortable. For some reason her throat seems to hurt her when she's flaring andI haven't quite figured that out yet. Visually it looks fine. She says her bottom feels better so I'm hoping it stays that way!

On another note, we are going to Disney next Friday and I'm thinking of getting her the Guest Assistance Card. Has anyone else done this? Last year when we went she ended up in the stroller, curled in a ball and crying, so I'm trying to avoid that. The excitement of theme parks seems to worsen her symptoms, always has. Hopefully Disney will be accommodating!
09-21-2013, 02:46 PM   #49
Patricia56
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It's possible she's doing poorly below 20 mg because that's what our body naturally produces in the mornings and hers has been relying on pred for along time and may be failing to produce the required amount now.

the answer to that, according to our ped endocrinologist, was to slow the taper way down, using a split dose (am and pm). If it's her adrenals not working well you risk problems because of that. Our ped endocrinologist said bad words under his breath about gi's and prednisone. Our experience was that they consistently want to taper too quickly.

You would of course need to check with your doc but you could try splitting the dose in half (8 am and 7 pm) then reduce the evening dose by half (8 am and 4 pm) then reduce the morning (4 am and 4 pm) then evening by half (4 am and 2 pm) then drop the evening dose altogether (4 am and 0 pm) then reduce the am dose in 1 mg doses. No faster than once a week. It takes longer but reduces the severity of sde effects and helps the adrenal glands start working again in a gradual way.

And yes tapering off causes body aches, headaches, mood swings, and generally feeling rotten. That's because the body is missing the boost it gets from the pred and lets you know it doesn't like it, especially if the adrenal glands are not working well yet.

As I said, I would talk with her doc. You could also ask for a referral to an endocrinologist, especially if she is having morning headaches which are typical of adrenal insufficiency.
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
09-21-2013, 02:54 PM   #50
Patricia56
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I forgot - any return of symptoms meant going back to the previous dose for 2 weeks and then going down more slowly. If you had dropped by 4 mg then you would do 2 mg instead.

To be steroid dependent means that her CD symptoms return when she goes down in pred or goes off it. I wasn't sure from your earlier post if that was clear.
09-21-2013, 03:06 PM   #51
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Oh Holy liver numbers....lol

Those are always the first labs back and they make me the most nervous. Bilirubin is only slightly elevated, Alk Phos is very low but holding steady at least, AST is high for the first time (but barely so), and ALT is now 86 (norm is 8-24). Not sure if these numbers will concern the GI or not.
You want Alk Phos to be elevated in kids as that is associated with growth. Since she's been on pred the low Alk Phos number fits with the fact that she's not growting.

AST - numbers that are close to normal within a couple points should be viewed as being within the margin of error for the test. So that's why docs don't get excited by them.

The ALT is concerning and I expect the GI will want to recheck that in a week or two. It is the most sensitive of the liver tests - the canary in the coal mine - so you definitely want to see that go down.

All labs are back now...

GGT is upper normal limits
MCV is slightly elevated
RDW is slightly elevated
GGT - as long as within normal limits you can stop worrying.
MCV, RDW - MCV and RDW are related and various combinations of results suggest different kinds of anemia and a few other illnesses. Elevated MCV means the red blood cells are slightly larger than normal. Elevated RDW suggests there are an unusually high number of red blood cells of different sizes.

IF the numbers are only slightly elevated and her H&H are normal then I would not worry. Also, if there is no note of anisocytosis (or any other -tosis) then the variation is not that much.

Last edited by Patricia56; 09-23-2013 at 01:04 AM.
09-21-2013, 04:48 PM   #52
DanceMom
Senior Member
A has 2 GIs consulting on her treatment course and they both want her off the Prednisone ASAP. They are concerned that her symptoms are due to the Crohn's and do not believe it is due to the taper at all. I'm not sure what to believe. I think they feel the way they do because she had symptoms return so drastically at 20 mg and that's when the dose was doubled. As soon as we started to taper symptoms started returning. The sooner she gets off the steroids the sooner we can figure out what's going on. I wish labs or fecal cal were good indicators of A's disease but they aren't.

And as I typed all that she had an accident (diarrhea). That's the second one today.
09-21-2013, 05:00 PM   #53
my little penguin
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What is the treatment plan Mtx or remicade/humira ?

Either one will still need pred to keep her stable until the drug kicks in.

Never easy
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09-21-2013, 05:10 PM   #54
DanceMom
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If things don't go well with 6-mp then the plan (as it stands now) is Remicade. The GI wants to do scopes to assess the disease prior to starting the Remicade. I'm still hoping her labs will look better and the 6-mp will start doing it's job. I'm fully aware that the plan has the potential to change along the way. That's what keeps me on edge.
09-21-2013, 05:50 PM   #55
Patricia56
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Ah I missed any reference to D, just saw the stuff about terrible headaches.

Could she be having symptoms of both CD and adrenal insufficiency?

I am so sorry she is going through this and hope she gets better SOON.
09-21-2013, 06:23 PM   #56
DustyKat
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Sorry if I missed this DanceMom, but since the GI's think it is Crohn's related has any sort of imaging been suggested to check progress?

It can be useful full stop but also when on steroids because if they are successful in reducing inflammation it can give a clearer indication of what exactly may be happening with the bowel re: stricturing/complications if present.

Thinking of you both mum.

Dusty. xxx
09-21-2013, 07:10 PM   #57
DanceMom
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Lately she's had x-rays (in ER) but that's all. She had an MRE the beginning of the year which was minimally helpful (showed some inflammation/thickening in the TI). Neither GI has mentioned repeating the MRE. Something to think about though......
09-22-2013, 06:12 AM   #58
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When was she last scoped?
09-22-2013, 06:53 AM   #59
DanceMom
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January 17th
09-22-2013, 08:06 AM   #60
DanceMom
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Patricia - What you said about the Alk Phos has really been bothering me. A really wants to grow so she feels like she fits in with her classmates/teammates. She's grown less than an inch since December and is in the 3rd percentile for her age. What you're saying is that as long as her Alk Phos is low we can expect her growth to be delayed? Is this likely due to the Prednisone?

Dec 12th - 46.5 in
Feb 26th - 47 in
April 17th - 47.2 in
June 11th - 47.3 in
Sep 11th - 47.4 in
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