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07-14-2013, 10:10 AM   #31
DanceMom
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GI came. He believes she has a virus that caused inflammation in her colon (based on her pain). Going to give Tramadol more regularly and add Neurontin to see if that helps. Will probably stop IV fluids soon. He will recheck her tomorrow.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
07-14-2013, 07:50 PM   #32
crohnsinct
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Yikes! I go away for one week and look what happens. So sorry for all you are going through. YES! Here's hoping it was a virus, especially given those other girls on her team were so sick.

FWIW: O has been cleared for all foods except popcorn...unless you are giving her that fancy pants popcorn we were all chasing a while back.....
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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
07-14-2013, 08:40 PM   #33
DanceMom
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I'm discouraged. A is basically the same. The Ultram gives her about 2-3 hours of mild pain but then it wears off and she's in terrible pain. The Zofran keeps her from throwing up but it doesn't take away the severe nausea. The Neurontin does nothing yet. From what they are telling me this is typical with Crohns. I'm heartbroken.
07-14-2013, 08:43 PM   #34
my little penguin
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Hugs you will find your basket of kitten soon.
Any and all evil drugs look like kittens in a basket when they work
Hope your lo improves .
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07-15-2013, 10:14 AM   #35
DanceMom
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Can't even count the number of doctors that have been in this morning! Lol Still waiting for her GI but the plan is for him to send her home after lunch. She did get out of bed for about 30 min to sit at the desk so that's an improvement. She's having trouble with BMs though - only small slivers coming out for 2 days now and she says it is painful when she goes.
07-15-2013, 02:17 PM   #36
DustyKat
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I hope they suss the BM problems out before they discharge.

Thinking of you both.

Dusty. xxx
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07-15-2013, 03:20 PM   #37
DanceMom
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We are home now! The GI came this afternoon and brought the NP with him. He's going out of town on Friday and wanted us to meet her in case we need anything while he's gone. He thinks that A is definitely in a flare, most likely brought on by a virus. He warned that this happens to some with IBD, even with something as simple as a cold. That didn't comfort me but I'm hoping it prepared me should this happen again. My child is far tougher than I am and handled the whole thing like a champ. I, on the other hand, feel heartbroken and crushed and I've seen just how quickly things can go from "a little rough" to "extremely bad". I no longer feel the comfort of thinking her case is "mild".

As for meds.....we are running a small pharmacy here, lol. So much for the pill organizer I was so happy over (the one that doesn't look like an old person's! lol). There's no way all of her meds will fit in there! A suggested labeling 7 solo cups with the days of the week, lol. On top of her usual meds we're adding Flagyl for 14 days (c-diff was negative but apparently Flagyl can help reduce inflammation), Neurontin until we are sure the flare is resolved, and Prevacid. We have an order for Tramadol as well but he thinks it is constipating her, allowing her to only produce those slivers. We're holding off on that one for now.

A is doing better today than yesterday. She's still in quite a bit of pain but is less nauseous. As she was being discharged she asked me if we'd be home in time for dance class, lol. Silly girl!
07-15-2013, 03:36 PM   #38
DustyKat
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I hope all heads into positive territory for A DanceMom, bless her.

Yes, Flagyl does have anti-inflammatory properties along with the antibiotic.

Onwards and Upwards for A!

Dusty. xxx
07-15-2013, 05:03 PM   #39
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DanceMom - my daughter was also recently put on Flagyl since she seems to be flaring. She's been on it 4 days and is already feeling better, though I'm not sure if that's the Remicade kicking in or the Flagyl. She complains of it leaving a "bad taste" in her mouth but is otherwise tolerating it well.
I hope it works for A soon! Good luck!
07-15-2013, 06:55 PM   #40
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She may not be 100% but am really glad she's feeling well enough to be asking for dance classes!

I hope you keep seeing steady improvement!
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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
07-16-2013, 07:10 AM   #41
DanceMom
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A is still feeling about the same this morning except a new symptom has come up. Her right eyelid is swollen! She says it doesn't itch but it is very uncomfortable, especially when she blinks. The eye itself is not red and there is no drainage. What the heck?!? Could this be related to the flare?

I will be leaving her with my hubby this morning while I take my other daughter to the hospital to see the ENT. Getting a second opinion before following through with her sinus surgery. I swear, we should just move next door to this hospital! When I return if the eyelid is still swollen I will call the Pedi. Just wondering if you all have had this happen before and what it was.
07-16-2013, 07:18 AM   #42
my little penguin
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Call on way to ent
It could be an allergic reaction to the new drugs
Or simply bad allergies
Best to talk to your Gi /allergist ASAP in case it progresses
Which it can rapidly
07-16-2013, 03:23 PM   #43
DanceMom
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I ended up running into the GI nurse when leaving my daughter's appointment (the GI and ENT clinics are next to each other). She asked about A and I told her about her eye. She said she'd run it by the doctor and then email me. Still haven't heard from her.

The swelling has gone down considerably but I'm watching it like a hawk. A says it hurts when she moves her eyes from left to right especially. Still no redness or drainage. She does not have food/environmental allergies so I don't think that is it.
07-16-2013, 03:58 PM   #44
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Was just catching up on your thread. Sorry to hear things have been so stressful! Hope the eyelid settles down and the other symptoms start to go away. I was also told that Flagyl has anti-inflammatory properties so hopefully they will kick in soon. Hope the ENT appt went okay as well. I felt like that last year - in and out with both kids
07-16-2013, 04:14 PM   #45
DanceMom
Senior Member
Actually, the ENT appointment was awesome and I've never left the hospital so pleased! The first ENT we saw (at a private clinic) recommended sinus surgery and gave us no other options. This ENT doesn't think sinus surgery will be necessary and gave us a detailed plan for sinus rinses. She is the new division chief and her passion is sinuses. I love that medicine and surgery is not her first plan of action and that she's done her own research to make these recommendations. Now fingers crossed that it works!
07-17-2013, 08:57 AM   #46
DanceMom
Senior Member
A seems to be doing a little better this morning. She's actually up and playing with her sister! Maybe the Neurontin is working? She did have one enormous BM that was diarrhea which is a big change from the large and dry stools she was having. I'm guessing because the Ultram is out of her system so she's no longer constipated? Her eye seems to be fine now so I guess it was just one of those freak things that happen. She likes to keep me on my toes! lol
07-19-2013, 12:15 PM   #47
DanceMom
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Strange new symptom....A woke up this morning with dried blood near the right side of her mouth. Her lips sometimes crack and bleed during the night so I thought that's what it was. Her lips didn't look particularly bad but I didn't question it. Just a few minutes ago A was sitting on the toilet and called me in there to "see something". She had blood on her hands and said she just spit it up. I looked all in her mouth, no visible sores. What the heck?!?
07-19-2013, 12:17 PM   #48
crohnsinct
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Yeah what the heck! Strange. Friday at 1:15....I might make a quick call on that. Ped or GI. Would just hate to sit on it and have something really show up over the weekend.
07-19-2013, 12:19 PM   #49
Tesscorm
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Yes, I would call too.

I've probably missed this but did she ever have inflammation in her esophagus or stomach?
07-19-2013, 01:17 PM   #50
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My thoughts too ^^^

... or maybe bleeding ulcers?
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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
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- Small bowel resection, Jan 2013
07-19-2013, 02:53 PM   #51
DanceMom
Senior Member
GI is on vacation right now. She's had gastritis in the past but never inflammation in her esophagus. The pill cam did show she had at least one bleeding ulcer in her small intestine. At this point I'm "gathering evidence" before I email him. She's on a million different meds so I think he wants to give them time. Bummer that her labs never indicate much.
07-19-2013, 03:42 PM   #52
DustyKat
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Could this be related to her ENT issues?

Is she doing the sinus rinses yet?

Dusty. xxx
07-19-2013, 03:52 PM   #53
DanceMom
Senior Member
She doesn't have sinus issues, thank goodness! That is my 6 yr old. Sinus rinses with a 6 year old are an interesting experience! lol

Basically, the GI is assuming she is having a flare based on the vomiting/diarrhea (that were controlled with medication) and her pain (lower left abdomen). He thinks her colon is inflamed. Her labs looks good and so did the abdominal x-ray (no blockages). If her colon is inflamed can that cause the thin stools? Is that expected with colon inflammation or is that dangerous? It is a new symptom for her though I did mention it to the GI while she was admitted. And I will definitely keep an eye on the blood! She is on Prevacid and Prilosec so what else could be done if she did have ulcers/inflammation in her esophagus?

I think the GI will only be out for a week. I did meet the NP and if things got worse I could always email her.
07-19-2013, 05:06 PM   #54
DustyKat
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Sorry!

Inflammation of the colon can cause thinning of stools. Inflammation causes swelling and oedema. Since it starts in the first layer of the bowel wall the swelling and oedema it produces will cause it to ballon out into the colon space, that in turn narrows the aperture down causing pencil thin stools. Blockage is your enemy in this case and that is what you have to be wary of. Severe pain, no bowel movements, or a very sharp decline with very little faecal matter passed and vomiting will be the signs to look for.

If the oesophageal ulcers are caused by reflux then you are already treating that but if they are apthous (Crohn's) ulcers then treating the underlying cause, inflammation, is what is needed.

Thinking of you mum!

Dusty. xxx
07-19-2013, 05:14 PM   #55
DanceMom
Senior Member
Thank you for the explanations! A has not had any BMs today and is feeling crummy right now so I'll keep an eye on that. And I really did not realize there were different types of ulcers! Besides the Prilosec/Prevacid she's also on Prednisone and Flagyl for inflammation. They just aren't working fast enough for my liking!
07-19-2013, 05:25 PM   #56
DustyKat
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What dose of Pred is she on now and when is she due to finish?

Dusty. xxx
07-19-2013, 05:31 PM   #57
DanceMom
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Well...she just passed something that was about an inch long and practically flat. Said it hurt and she felt like she was straining to get that out.

She's on 20mg of Prednisone and that's what she started out on. The plan is to start weaning once she's been on 6-mp for 2 months (she's at 3 wks right now).
07-19-2013, 05:35 PM   #58
DustyKat
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Okay, shame they didn't start her on the 6MP at the same time she started the Pred.

How old is your lass again?
20mg doesn't seem a very high start up dose.

Dusty. xxx
07-19-2013, 05:39 PM   #59
DanceMom
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She's 8 and weighs 50 lbs (but weighed about 45 lbs when she started the Prednisone). What would a standard dose be for a child that weighs 50 lbs?
07-19-2013, 05:50 PM   #60
my little penguin
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DS was at 20 mg last summer and about the same weight and age but it wasn't enough so they upped him to 30 mg for a bit before weaning back down to 20 mg.

We were told max kiddie dose is 40 mg.

They don't like to do the higher doses for very long.
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