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09-11-2013, 08:08 PM   #1
DanceMom
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GI Check-Up

A had her 3-month check-up this afternoon and it was a bit of a whirlwind appointment for some reason. Overall, she's been managing okay. Her main complaints have been her intense headaches and her sore/itchy bottom.

We were given 3 options for the headaches - see a Neurologist, try Elavil (which requires an EKG first), wait and see if they go away on their own. We opted for the wait and see approach.

He looked at her bottom (which was very red) and wasn't quite sure what the problem was. It could be red due to inflammation related to IBD or because she scratches it. He swabbed her for strep but said it could also be pinworms. We're waiting on the swab results and if they are negative he'll treat for pinworms. If that doesn't help she'll try a round of Flagyl. Nothing is ever black and white for her.

He wants to see her again in 2 months. At that time we'll discuss the possibility of scopes and moving to Remicade. I'm not excited. She isn't doing terribly but he wants to be aggressive and I understand that. Trying not to worry about the what-ifs for now.

As A was brushing her teeth tonight she came out and told me that the roof of her mouth has been bleeding the last few times she's brushed her teeth. I look and she has two small sores next to each other. She says they only hurt when she touches them with her tongue or toothbrush. She's never had mouth sores before and I'm not sure if it is Crohn's related or not. Hoping she just ate something hot that scalded her mouth.

Labs tomorrow morning and hopefully they're good. I can't take any bad news because my head is still spinning from the mention of Remicade.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
09-11-2013, 08:35 PM   #2
crohnsinct
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The bottom issues can also be yeast. Especially being a dancer. Don't ask how I know!

I sure hope those mouth sores aren't anything and that you can stay safely tucked away in your bubble!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
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Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
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Previously used: Mtx injections
09-12-2013, 12:17 AM   #3
Jennifer
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Have you tried diaper rash creams or any other creams for the itching? It may help with that at least and help reduce the scratching (which only causes more itching from what I remember as a kid). Did the doctor do a full rectal exam or just look at it? Internal hemorrhoids can cause itching as well.

I used to get canker sores/aphthous ulcers a lot as a kid. Salt rinses or for me I just put salt directly on them (I think it was my dad's idea originally but hey, it worked better for me). Here's info on them if you need it: http://www.mayoclinic.com/health/canker-sore/DS00354

Could the headaches be related to dehydration or a vitamin deficiency (has she had blood work recently to check for any vitamin deficiencies?)?
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
09-12-2013, 05:49 AM   #4
Dexky
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I'm sure it's possible, but usually aphthous ulcers are found on the tongue, gums and inner lips. My son's were always on his tongue. Has she had her vit B levels tested. We, and others here, have got relief from mouth sores with added vit B supplements.

I'm no doctor, but I don't think I'd jump from either strep or pin worms w/o a little more investigation!
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EJ dx w/ Crohn's 12/09
PSC 3/10

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09-12-2013, 06:37 AM   #5
Farmwife
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We're treating Grace for a yeast infection in that area but I'm still not sure what it is.

Let us know what you find out.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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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
09-12-2013, 07:19 AM   #6
crohnsinct
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Also O has psoriasis there. Doesn't have the characteristic scales...just red raw and itchy.
09-12-2013, 08:24 AM   #7
DanceMom
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Jennifer - We've tried diaper rash cream on the area but it doesn't seem to make a difference. Occasionally the redness/itching/burning will resolve on its own only to come back again a few days later. Very frustrating.

Crohnsinct - I have thought about the tights issue. She is now only wearing them for ballet (1 hr/1x wk) and washes after each wear. For other classes she wears underwear/shorts.

Dexky - I know the roof of the mouth is an odd place for an ulcer but A is an odd child, lol. Still hoping it is something else. And I'm not sure what you mean about "jumping from strep to pinworms without a little more investigation." What would you suggest?
09-12-2013, 05:01 PM   #8
ChampsMom
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If it is a yeast thing you can also use over the counter Lotrimin or a store brand. Our pediatrician had me do that for diaper rash with my son. It is cheaper, works faster and does a better job at keeping it gone. (Just a thought...)

Hope her mouth feels better soon
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Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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09-12-2013, 05:46 PM   #9
CarolinAlaska
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Nystatin cream for yeast works great but needs a prescription.
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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.
09-12-2013, 08:16 PM   #10
Farmwife
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Grace's GP just prescribed Nystatin for her.
I hope it works.
these poor kids have enough going on without these type of things.

I'll let you know.
09-13-2013, 04:45 AM   #11
Dexky
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And I'm not sure what you mean about "jumping from strep to pinworms without a little more investigation." What would you suggest?
The doc made it sound like those were the only two possibilities and would be treating her for pinworms if she was negative for strep. Maybe I read it wrong?
09-13-2013, 05:06 AM   #12
DanceMom
Senior Member
We are hoping it is strep or pinworms and not perianal disease. He said pinworms are common in kids and it would be an easy fix. If it turns out that the inflammation is IBD related we will try another round of Flagyl since it worked well for her last time.
09-13-2013, 06:28 AM   #13
crohnsinct
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Yep! Nystatin works lickety split...if it doesn't then you know something other than yeast is going on...that's what made them look at O a second time, biopsy and what do you know....psoriasis.
09-13-2013, 06:54 AM   #14
Farmwife
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Yup, Grace's redness is clearing up already. It was yeast. THANK GOD.

We sure are a strange bunch.

I hope it's an easy fix for her. HUGS
09-13-2013, 07:12 AM   #15
DustyKat
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I hope the problems that A is experiencing are easily fixed DanceMom, bless her.

Unfortunately, for Sarah severe headaches were a sign of active disease.

Dusty. xxx
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09-13-2013, 09:11 AM   #16
DanceMom
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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.
09-13-2013, 10:03 AM   #17
DanceMom
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All labs are back now...

GGT is upper normal limits
MCV is slightly elevated
RDW is slightly elevated

Any thoughts??
09-13-2013, 04:12 PM   #18
Sascot
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Not sure about the other bloods, but ALT is the one we always keep an eye on the most. When my son reached about 90 they got concerned. Will they let you know if they are concerned or is "no phonecall - good news"?
09-13-2013, 05:09 PM   #19
DanceMom
Senior Member
GI called. He is slightly concerned about her numbers but is hoping her body turns things around. We will test again in 10 days. If her numbers are any higher it is on to scopes and Remicade.

Meanwhile, she is in bed with a headache/stomachache. This disease is awful.
09-13-2013, 05:37 PM   #20
DustyKat
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{{{Hugs}}} to you DanceMom...

Thinking of you and hoping more than anything that A is soon on the mend.

Dusty. xxx
09-13-2013, 05:44 PM   #21
my little penguin
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hope the numbers go down-
if not you get a plan quickly.
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09-14-2013, 12:37 AM   #22
CarolinAlaska
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Sorry to hear the bad news about the labs. I hope they normalized quickly.
09-14-2013, 06:26 PM   #23
ChampsMom
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I hope she feels better....
09-14-2013, 11:09 PM   #24
Gmama
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Big hugs to you & A Dancemom! Hope A is feeling better soon! The trial & error of this disease makes me nuts
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09-15-2013, 11:43 AM   #25
DanceMom
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Friday was a rough night. A's headache was so bad she wouldn't eat, drink, or even speak. She also felt nauseous and just downright miserable. Yesterday was better. No headache, but she spent a good portion of the day in the bathroom. Today she seems more like herself. I'm wondering if this is due to the prednisone taper. Friday is our step-down day. I guess time will tell.

On a positive note - her mouth seems to be fine so I'm guessing it wasn't an ulcer.

Still holding my breath.......
09-15-2013, 12:18 PM   #26
my little penguin
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Hugs

Weaning from pred was a big migraine trigger for DS.
I was so glad when that was over.
09-16-2013, 05:15 AM   #27
Dexky
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Has the strep and pin worms been ruled out?
09-16-2013, 05:35 AM   #28
DanceMom
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Strep has not come back yet. Hopefully today.
09-16-2013, 05:43 AM   #29
Johnnysmom
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Prednisone worked well for us, it put my DS into remission.

But it did cause headaches and bumps in the road while tapering.

It got much better as time went on and stopped completely about a week after we were done with the Prednisone.

((((Hugs)))))
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09-16-2013, 03:43 PM   #30
DanceMom
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Strep is negative. GI is thinking about testing for pinworms because he doesn't want to add any unnecessary meds right now since we are watching her liver numbers so carefully. Getting tired of holding my breath, lol.
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