Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » About Crohn's Forum Families


 
12-04-2013, 01:41 PM   #1
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
About Crohn's Forum Families

I was hoping we could create a central thread where we list basic info about our kids and what we have experience with so that others can scroll through the list and see who may have similar experiences or who might be an expert in something. Share as much or as little as you like. This is similar to what many people have in their signatures, just all in one place.

Just copy and paste the questions from below. As things change, you can later edit your info.

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.


2. Boy or girl? Year of birth?


3. Location?


4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.


5. Current medications and supplements?


6. Failed medications and reason for failure?


7. Other medications you have experience with?


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.


9. Special diets your child is on or has tried?


10. What side effects or EIM's has your child experienced?


11. Other topics of interest that you can provide support to others on?

Last edited by Mehita; 12-04-2013 at 03:56 PM.
12-04-2013, 01:45 PM   #2
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
- Crohn's Disease, 2008
- Celiac Disease, 2008

2. Boy or girl? Year of birth?
-Boy, 2000

3. Location?
-Minnesota, USA

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
-Colonoscopy, endoscopy, PICC, small bowel resection, IV antibiotics @ home, IV infusions, epidural, NG tube insertion, MRE w/contrast, bone scan.

5. Current medications and supplements?
-Remicade
-Vit D
-Probiotics
-Multivitamins

6. Failed medications and reason for failure?
-Pentasa, not strong enough
-Azathioprine, not strong enough
-Vancomycin, allergic reaction

7. Other medications you have experience with?
-Prednisone
-Clindamycin
-Zosyn
-Flaygl
-Ciproflaxin
-Zofran
-Miralax
-Omeprazole

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
-Pediatrician
-Gastroenterologist
-Surgeon
-Ophthalmologist
-Endocrinologist

9. Special diets your child is on or has tried?
- Gluten fee
- Low fiber
- Low residue

10. What side effects or EIM's has your child experienced?
- Abscess
- Fistula
- Small bowel stricturing

11. Other topics of interest that you can provide support to others on?
- Gluten free living
- 504 plans for US schools

Last edited by Mehita; 04-21-2015 at 08:18 AM.
12-04-2013, 02:08 PM   #3
Jmrogers4
Moderator
 
Jmrogers4's Avatar
 
Join Date: Jun 2012
Location: Boise, Idaho

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohn's - March 2, 2010

2. Boy or girl? Year of birth?
Boy 1999

3. Location?
Boise, Idaho

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy, endoscopy, MRE,

5. Current medications and supplements?
Remicade
Vitamin D
Mulit-vitamin
Pediasure Peptide

6. Failed medications and reason for failure?
Apriso - Didn't make any difference
Methotrexate (oral) - developed bronchitis/lung issues, bleeding rash on hands
Pentasa - Didn't make any difference
LDN (low dose naltrexone) - quit working - may still go back to this. Brought about remission for quite a while.
Imuran - tried twice, still had small bowel inflammation

7. Other medications you have experience with?
Levsin (Hyoscyamine)
Omeprazole
Prednisone
Periactin (cyproheptadine)
Allipurinol - used to make the Imuran stronger, more theraputic

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastro
Endocrinologist (on 12/31)
Opthomologist

9. Special diets your child is on or has tried?
SCD -too hard
Paleo - couldn't stick to it
Gluten Free- slowly added gluten back with no issues

10. What side effects or EIM's has your child experienced?
bronchitis/cough from methotrexate
eczema
joint pain
Bleeding rash

11. Other topics of interest that you can provide support to others on?
Oral PEN, EN, EEN
504 plans
delayed puberty
lack/decreased appetite
__________________
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

Last edited by Jmrogers4; 01-25-2014 at 10:40 PM. Reason: New test and medicine added
12-04-2013, 03:06 PM   #4
DanceMom
Senior Member
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohn's Disease- April 2013 (withdrew diagnosis November 2013)
Asthma- 2010
Common Variable Immunodeficiency- July 2014 (now considered hypogammaglobulinemia)


2. Boy or girl? Year of birth?
Girl; 2005

3. Location?
Central Florida

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
EGD/Colonoscopy, MRI/MRE/MRA, CT scan, x-rays, pill cam, white cell scan, pulmonary function tests, immune testing, IVIG

5. Current medications and supplements?
IVIG (Privigen), QVar40, Flonase, Tylenol & Benadryl (pre and post infusion), Kiddie Vitamins, Zofran PRN, and Flagyl whenever GI issues arise

6. Failed medications and reason for failure?
6-mp - caused liver toxicity
Pentasa - didn't make much of a difference
Neurontin, Bentyl, Hyoscyamine - didn't help
Methotrexate - did not eliminate all symptoms; decided to discontinue and pursue more testing

7. Other medications you have experience with?
Cortifoam, Periactin, Prevacid, Prednisone, Prilosec

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
GI, Rheumy/Immuno, Pediatrician, Pulmonologist, Dermatologist, Second Opinion Immunologist

9. Special diets your child is on or has tried?
not on any special diet, just trying to push calories!

10. What side effects or EIM's has your child experienced?
Side Effects - nausea, weight gain, trouble sleeping, moodiness
EIMs - joint pain, erythema nodosum (or possibly vasculitis), fatigue, fissure, FTT, tingling/weakness in arms and legs, urinary symptoms

11. Other topics of interest that you can provide support to others on?
immune testing
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept

Last edited by DanceMom; 05-04-2015 at 02:31 PM.
12-04-2013, 03:52 PM   #5
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Dx'd crohn's March 2013 have also dealt w/cystic acne for years

2. Boy or girl? Year of birth?
Girl; 1997

3. Location?
St. Louis MO

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
contrast MRE, upper and lower scope, PICC line (2x), small bowel resection

5. Current medications and supplements?
Apriso, Imuran, Flagyl
Vit D, probiotics, Omega 3, L-Glutamine

6. Failed medications and reason for failure?


7. Other medications you have experience with?
doxycycline used for cystic acne for years - never helped and prob helped trigger crohn's
zosyn - used while waiting for surgery
TPN - used while waiting for surgery

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
GI, psychologist, endocrinologist (born hypothryroid), dermatologist

9. Special diets your child is on or has tried?
Gluten-free, dx'd gluten intolerance 2001

10. What side effects or EIM's has your child experienced?
bowel to bowel fistula, stricturing/obstruction, fissure and skin tag
The fistula has healed and the stricturing/obstruction was removed w/resection surgery in June 2013

11. Other topics of interest that you can provide support to others on?
gluten-free diet - our family has been gf for 10 years - my husband is celiac
__________________
Linda
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
12-04-2013, 09:54 PM   #6
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohns. First colonoscopy in 2006 after having Bronchitis/diarrhea from antibiotic. Dx was unsure. Confirmed dx in 2010

2. Boy or girl? Year of birth?
Boy 2000

3. Location?
Kansas

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy, MRE, Small bowel follow through, Endoscopy,

5. Current medications and supplements?
Cimzia, Methotrexate, Folic acid, Pentasa, Pediasure 1.5 cal (EN), Flagyl, multi vitamin, Zantac

6. Failed medications and reason for failure?
Azathioprine- just didn't do anything. Remicade-anaphylactic allergic reaction on 3rd infusion (Confirmed antibodies), Humira- seemed to wear out even dosing 40mg every 10 days,

7. Other medications you have experience with?
Prednisone, Pentasa, Azathioprine, Remicade, Humira, Cimzia, Methotrexate (oral and injections), Flagyl, Rowasa enemas, Entocort, Bentyl, Levsin, Zofran

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastroenterologist, Endocrinologist, Dermatologist, Opthamologist, GI psychologist

9. Special diets your child is on or has tried?
Gluten free, and Enteral Nutrition

10. What side effects or EIM's has your child experienced?
Erythema Nodosum, fissure, skin tag, abscess in anal area

11. Other topics of interest that you can provide support to others on?
Stunted growth and underweight was symptom we originally didn't think was a symptom. GI calls it Failure to thrive
12-04-2013, 11:26 PM   #7
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Diagnosed with crohn's March 2012

2. Boy or girl? Year of birth?
Girl, 1997

3. Location?
Australia

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Upper and lower scopes, MRE and Bone density scan

5. Current medications and supplements?
Imuran and Pentasa

6. Failed medications and reason for failure?
Sulfasalazine and Salofalk which both caused diarreha

7. Other medications you have experience with?
Prednisone, Flagyl, metronidazole and Nexium

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
GI and Ophthamologist

9. Special diets your child is on or has tried?
None

10. What side effects or EIM's has your child experienced?
Joint pain and rashes
__________________
Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014




Last edited by upsetmom; 12-05-2013 at 03:15 PM.
12-05-2013, 05:18 AM   #8
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Sarah - Crohnís 10th July 2006
Matt - Crohnís 1st December 2010

2. Boy or girl? Year of birth?
Sarah - 1992
Matt - 1993

3. Location?
New South Wales, Australia

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Sarah - Ultrasound, nuclear scan, CT, ileocaecal resection with associated tubes, drains and IVís.
Matt - Ultrasounds x4, CT x(?)5, CTE, upper and lower scope, pig tail drain (3 months), multiple IVís, ileocaecal resection with the associated tubes, drains and IVís.

5. Current medications and supplements?
Sarah - Imuran, B12, Folic Acid, Vit D, Psyllium HuskÖnot sure of other supplements.
Matt - Imuran, Pentasa, B12, Vit D, Magnesium, Zinc, Tumeric, Psyllium Husk.

6. Failed medications and reason for failure?
Sarah - Nil.
Matt - Nil.

7. Other medications you have experience with?
Prednisone, various antibiotics - Flagyl, Augementin Duo Forte, Gentamycin, Ampicillin...

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Sarah - Gastroenterologist, Opthalmologist. Did see a Neurologist for a while but no longer required.
Matt - Gastroenterologist, Opthalmologist.

9. Special diets your child is on or has tried?
Sarah - Chose to transition from a normal diet to vegetarian..vegan..raw vegan. Now fluctuates between vegan and raw vegan and is contemplating adding seafood back in. Has a very limited intake of sugar.
Matt - No special diet.
Neither one has ever been fond of meat red since surgery.

10. What side effects or EIM's has your child experienced?
Sarah - Joint pain, sore eyes, delayed puberty, ruptured and infarcted bowel with fistula and abscess.
Matt - Mouth ulcers, fistulas, abscesses.
__________________
Mum of 2 kids with Crohn's.
12-05-2013, 12:24 PM   #9
Skymama
 
Skymama's Avatar
 
Join Date: Aug 2013
Location: Portland, Oregon
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohn's Disease & Osteopenia- August 2013

2. Boy or girl? Year of birth?
Boy 1997

3. Location?
Portland, OR

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy, Endoscopy, MRE w/contrast, Ultrasound, DEXA Scan

5. Current medications and supplements?
Methotrexate (by injection), Calcium, Vitamin D3, Iron, Zinc, Folic Acid, Kids Multivitamins, Ensure drinks

6. Failed medications and reason for failure?
None so far!

7. Other medications you have experience with?
Prednisone

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastroenterologist, Ophthalmologist

9. Special diets your child is on or has tried?
Lactose free (since he is intolerant), Low Fiber & Low Residue

10. What side effects or EIM's has your child experienced?
Multiple Vitamin deficiencies, Anemia, Oral Ulceration, Finger Clubbing, Osteopenia, Fatigue, Fevers, Weight loss, Hair loss
12-05-2013, 12:45 PM   #10
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.

Dx Crohn's Aug 2008, dysautonomia (POTS) May 2009


2. Boy or girl? Year of birth?

Female born 1998

3. Location?

Roanoke, VA

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.

Colonoscopy/endoscopy 2008,09,10,11
Capsule endoscopy 2011,12
Upper GI w/SBFT 2011
DEXA scans 2009,12
Head MRI 2012
Throat MRI 2013
Abd MRI and MRE 2013
NG tube feeds
Hospitalizations 2008,13


5. Current medications and supplements?

Remicade, Imuran, calcium, iron


6. Failed medications and reason for failure?

Pentasa, Humira, Flagyl, 6-mp, methotrexate. No adverse effects, no response.
Prednisone, excellent response; side effects: hair growth on arms, fluid retention


7. Other medications you have experience with?
Florinef, atenolol, cyproheptadine.


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.

Pedi GI and pediatrician currently. But has seen: pedi cardiologist, oncologist, rheumatologist, ENT, neurologist.

9. Special diets your child is on or has tried?

Exclusive enteral feeds of elemental formula


10. What side effects or EIM's has your child experienced?

Mouth sores, joint pain, skin rashes, joint weakness, extreme fatigue, "brain fog", hypocortisolism, joint hypermobility (unproven link to IBD).


11. Other topics of interest that you can provide support to others on?

NG tube feeds are the bomb
__________________
VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira

Last edited by imaboveitall; 12-05-2013 at 01:06 PM.
12-05-2013, 12:54 PM   #11
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohn's March 2013
Juvenile arthritis (spondyloarthropathy) February 2009
Ankylosing Spondylitis January 2013

2. Boy or girl? Year of birth?
Girl, 1996

3. Location?
New York

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Upper and lower scopes, MRE, multiple MRIs, CT scan, Ultrasound, DEXA scan, X-rays, Infusions (Remicade and iron)

5. Current medications and supplements?
Remicade, Prevacid, Mobic, Pentasa, Calcium, Vit D, Multivitamin

6. Failed medications and reason for failure?
Enbrel (prior to Crohn's diagnosis) - worked for a year, then stopped working
Humira- worked for 2 years then stopped working
Sulfasalazine - didn't work
Methotrexate - side effects - extreme nausea and dizziness


7. Other medications you have experience with?
Flagyl, Prednisone, Entocort, Zofran, Cymbalta

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastroenterologist, Psychologist, Rheumatologist, Opthalmologist


9. Special diets your child is on or has tried?
Low residue

10. What side effects or EIM's has your child experienced?
Iron deficiency anemia, nausea, mouth ulcers, fatigue, weight loss

11. Other topics of interest that you can provide support to others on?
Joint pain
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-05-2013, 12:54 PM   #12
CrohnsKidMom
Senior Member
 
CrohnsKidMom's Avatar
 
Join Date: Mar 2013
Location: (Canada), Nova Scotia

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
-Crohn's disease, mainly in jejunum of small intestine. Fell ill Jan. 2013, diagnosed Mar. 2013.

2. Boy or girl? Year of birth?
-Boy. Born 2004.

3. Location?
-Nova Scotia, Canada.

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
-IVs, ultrasound, MRE, indium scan (white blood cell scan-nuclear medicine), endoscopy, colonoscopy.

5. Current medications and supplements?
-methotrexate (weekly injections), folic acid, vit D, multi vit, calcium, restoralax.

6. Failed medications and reason for failure?
-Imuran/aza. Caused high fevers and elevated liver enzymes.

7. Other medications you have experience with?
-prednisone.

8. Type of specialists your child sees? I.e. gastro, Rheumy, Psych, etc.
-gastroenterologist.

9. Special diets your child is on or has tried?
-low residue diet while flaring.

10. What side effects or EIM's has your child experienced?
-joint pain, mouth ulcers, and skin rashes.

11. Other topics of interest that you can provide support to others on?
-happy to support others emotionally as much as I can!
12-05-2013, 01:00 PM   #13
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohn's Disease 02/2012


2. Boy or girl? Year of birth?
Boy 1996

3. Location?
Georgia

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
SBFT, sigmoidoscopy, endoscopy, colonoscopy, CT scan, MRI, MRE, ng tube, catheter

5. Current medications and supplements?
Remicade- Every 6 weeks, Methotrexate 7.5mg once per week(oral), Folic Acid 1mg daily, vitamin D, melatonin

6. Failed medications and reason for failure?
Prednisone at time of dx, he received no relief from pred and it didn't damp down inflammation though I feel it may have prevented further progression(?)


7. Other medications you have experience with?
None other than methotrexate at a higher dose 25mg once a week(oral)


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
GI, Rheumy, Ophthalmologist,

9. Special diets your child is on or has tried?
Low Residue-during flare it seemed to help
SCD- at 6 weeks no results and difficult as far as compliance with teen


10. What side effects or EIM's has your child experienced?
Episcleritis, joint pain

11. Other topics of interest that you can provide support to others on?
just lots of support
__________________
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
12-10-2013, 03:56 PM   #14
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
∑ Stoma
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
September 2012-Indeterminate Colitis
November 2012-Crohn's - small & large intestines & esophagus

2. Boy or girl? Year of birth?
Girl-2000

3. Location?
Toronto, Canada

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy, Endoscopy, PICC, MRI, CAT Scan, Ultrasound

5. Current medications and supplements?
Humira, Prevacid, Methotrexate, Flagyl, Steroid Enema, Folic Acid, Vitamins+Iron & Calcium
Exclusive Enteral Nutrition (Peptamen Jr. 1.5) by NG tube

6. Failed medications and reason for failure?
Remicade - built up antibodies
Steroid Enema - very uncomfortable, kid asked not to
Cipro - Did nothing to calm symptoms

7. Other medications you have experience with?
Questran, Prednisone, Cortifoam

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
GI, Infectious Disease Doctor, GP, Dermatologist

9. Special diets your child is on or has tried?
Lactose Free - Still on, Glutten Free - didn't make any difference for her, did for me! Now on a strict no food diet by mouth.

10. What side effects or EIM's has your child experienced?
Anaphylaxis shock from medications (Penicillin & Remicade)

11. Other topics of interest that you can provide support to others on?
no
__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆

Last edited by SupportiveMom; 04-21-2014 at 07:24 AM. Reason: Update
12-10-2013, 04:19 PM   #15
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
September 20, 2008
Crohn's Disease

2. Boy or girl? Year of birth?
Girl
1997
3. Location?
Missouri

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Multiple Colonoscopies and endoscopies
MRE
Pill Camera
Surgical rescetion


5. Current medications and supplements?
Low Dose Naltrexone
Tumeric
Probiotics
zantac


6. Failed medications and reason for failure?
Imuran severe allergic reaction
Remicade severe allergic reaction
Humira reaction to shot itself
methotrexate stopped working
Enteral Nutrition daughter would not stick with it.

7. Other medications you have experience with?
Amitryptalline was taking for pain was stopped last year

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastro only
had consult with rheumy who told us there is no such thing as crohns arthritis. needless to say not going back to him again

9. Special diets your child is on or has tried?
Enteral Nutrition

10. What side effects or EIM's has your child experienced?
Crohns arthritis
two spots of erythema nodosum a few years ago

11. Other topics of interest that you can provide support to others on?
Low dose natlrexone as an alternative treatment for crohns.

Last edited by Mehita; 12-04-2013 at 03:56 PM.
__________________

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.
12-10-2013, 09:47 PM   #16
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohn's Jan 2012 aged 16
Asthma

2. Boy or girl? Year of birth?
Girl 1995

3. Location?
Melbourne, Australia


4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy x 2
Upper Scope
MRI x 2

5. Current medications and supplements
Imuran
Caltrate
Iron
B12
B Multi

6. Failed medications and reason for failure?


7. Other medications you have experience with?
prednisone


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastro


9. Special diets your child is on or has tried?
FODMAP prior to dx

10. What side effects or EIM's has your child experienced?


11. Other topics of interest that you can provide support to others on?
Iron
Folate
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)

Last edited by Catherine; 05-03-2014 at 06:41 AM.
12-11-2013, 09:31 AM   #17
CDJ
Senior Member
 
CDJ's Avatar
 
Join Date: Jan 2013
Location: Uttoxeter, United Kingdom

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.

Crohns disease, diagnosed Oct 2009


2. Boy or girl? Year of birth? Boy, 2001


3. Location? Uttoxeter, England


4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy
Endoscopy
Pill cam
NG tube
Modulen
MRI scan
CAT scan

5. Current medications and supplements?
Azathioprine
Pentasa
ferrous sulphate
buscupan
Calci chew
omeprazole
zinc
multi vitamin


6. Failed medications and reason for failure?
none so far


7. Other medications you have experience with?
Steriod enema


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.

Gastro consultant. Did see psych counsellor for a few months, but not anymore.


9. Special diets your child is on or has tried?
Benzoate, preservative, cinnamon free diet for 6 months, which had no affect, though has to avoid cinnamon and ginger.


10. What side effects or EIM's has your child experienced?
Iritis [ twice ] fatigue, low iron levels, joint pain.


11. Other topics of interest that you can provide support to others on?
__________________
Son - -14
diagnosed 29/10/2009

Taken off azathioprine Jan 2011 due to needle phobia
carried on with just pentasa until March 2013

6 weeks Modulen Dec 12 / Jan 13

Finally overcame needle phobia after 3 very long years due to getting right help.

Currently on
125mg Azathioprine
3000mg Pentasa
20g Omeprazole
20mg Buscopan
5mg Prednisolone
Isoniazid
Pyridoxine
600mg ferrous gluconate
250mg zinc
Started Infliximab 18/03/15
12-15-2013, 03:31 AM   #18
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Failure to Thrive 2000
Rotavirus 2000
Seizure disorder 2003
Chronic diarrhea age 1-8, stopped with gluten-free diet
Failure to go into puberty age 13, 2012, has since moved beyond this
Crohn's 1-2013
Anxiety 11-2013
Recurrent tonsillitis 2012-13

2. Boy or girl? Year of birth?
Girl, 1999

3. Location?
Alaska, USA

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
VCUG, colonoscopy, video endoscopy, MRE, MRI (head x 2?), EEG x 2, NG tube placement without/with anesthesia

5. Current medications and supplements?
6MP, Vitamin D3, Zinc, Culturelle, Prilosec (just started)

6. Failed medications and reason for failure?
Periactin - after just one dose had a seizure (hadn't had for a year previous), so I called a halt to it. I have also refused amitriptyline for risk of seizure, weight loss and nausea, and history of suicidal ideation. She failed two seizure meds for cognitive problems, GI side effects, suicidal ideation.

7. Other medications you have experience with?
Penicillin, amoxicillin, Keppra, Trileptal, Lamictal, Omnicef (cefdinir)

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Peds GI and pediatrician now, has seen neuro, urologist, endocrinologist (at two separate times for FTT). Has first appt in January with psychology.

9. Special diets your child is on or has tried?
Gluten-free - controls diarrhea and helps with abdominal pain

10. What side effects or EIM's has your child experienced?
Side effects: Not many to GI meds except what was listed above.
EIMs: Joint pains, anxiety, seizures (from poor nutrition)

11. Other topics of interest that you can provide support to others on?
?
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
01-04-2014, 11:39 AM   #19
Zoodles
Senior Member
 
Join Date: Oct 2010
Location: Ohio

My Support Groups:
Just copy and paste the questions from below. As things change, you can later edit your info.

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
June 2009
Significant weight loss and growth delay
joint pain
constipation


3. Location? Ohio

2. Boy or girl? Year of birth? Boy 2000

4. What procedures has your child experienced?
colonoscopy, endoscopy, barium contrast with bowel follow through, CAT scan, MRI


5. Current medications and supplements? Humira, probiotics


6. Failed medications and reason for failure? Predniso, Entocort, Imuran, priilosec, pentasa- never brought into clinical remission or eliminated pain/symptoms

7. Other medications you have experience with? assorted cocktails of supplements,

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastro, Internists

9. Special diets your child is on or has tried? Low residue


10. What side effects or EIM's has your child experienced? fatigue, joint pain, constipation


11. Other topics of interest that you can provide support to others on? How not to cope with a child with illness
__________________
Mom of Brendan
Diagnosed June 2009- symptoms started 2007
Humira
Pentasa 500 mg 2x/day
Vitamin
Probiotic
Multivitamin
02-10-2014, 03:04 AM   #20
Fiera
 
Fiera's Avatar
 
Join Date: Feb 2014
Location: Kuantan, Malaysia
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
- Jan 2013
- Malrotation of ileum and jujenum

2. Boy or girl? Year of birth?
- Boy / 2011

3. Location?
- Kuantan, Pahang, Malaysia

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
- Left Knee : X-ray, Ultrasound, MRI
- Colon: X-ray, Ultrasound, Barium, upper and lower scope.

5. Current medications and supplements?
- Probiotic - 1 time per day. Helps to reduce constipation / watery stool.
- Multivitamin - help to build his antibody.

6. Failed medications and reason for failure?
- Cloxacilin - antibiotic after 1st time knee surgery - 1 month - the knee swell again and we have another surgery at the left knee (twice).
- Augmentin - antibiotic after 2nd time knee surgery - 1 month
- Pentasa - 4 months - didn't work at all - getting worst after take medication
- Rhinatidine - docs do not allow to take on long term basis.

7. Other medications you have experience with?
- Ibuprofen - currently under this medication for 2 months since knee swell again. Thus, do not take for long period as it will cause gastritis.
- Zantac
- Gaviscon - as prescribed by Gastro in Selayang Hospital - it helps to reduce bloated and gastritis pain.

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
- Gastro
- Rheumato
- Surgeon
- Opthamologist

9. Special diets your child is on or has tried?
- Reduce comsumption of brocolli and cauliflower.
- No French fries or anything with potato based.
- Avoid meat (lamb or beef). Once consumed, he will have IBD the next day.
- Make sure take meals on time.

10. What side effects or EIM's has your child experienced?
- Abscess
- Fistula
- Blood and Mucus stool
- Restless sleep
- Left knee swollen & pain - unknown result until now
- Rashes at his back
- Extreme bloated and vomitting

11. Other topics of interest that you can provide support to others on?
- In Malaysia, Crohn's can be consider as a very rare case. Very difficult to find a group of support. Hopefully we could share something that will increase our knowledge aboud this health problem.

Last edited by Fiera; 03-30-2015 at 09:02 PM. Reason: Based on latest health patern.
02-10-2014, 05:48 PM   #21
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohns colitis 02/2010

2. Boy or girl? Year of birth?
girl 2006

3. Location?
upstate NY

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
endoscopy, colonoscopy, MRE, NG,

5. Current medications and supplements?

Simponi

6. Failed medications and reason for failure?
Pentasa, prednisilone, Remicade, Humira, Tacrolimus, bactrim, Carafate, Prilosec, Cortifoam, sulfasalazine

7. Other medications you have experience with?


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.

GI, chiro
9. Special diets your child is on or has tried?
Paleo, we also tried cutting out everything but lean fish/chicken, and processed white foods.

10. What side effects or EIM's has your child experienced?
Back pain, joint pain, vomiting, weight loss, weight gain, abdominal pain, bloody diarrhea, fatigue, warts [immune suppression related]

11. Other topics of interest that you can provide support to others on?
__________________
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.

Last edited by izzi'smom; 01-20-2015 at 06:34 PM.
04-04-2014, 08:17 PM   #22
Santafish
 
Santafish's Avatar
 
Join Date: Apr 2014
Location: Regina, Saskatchewan
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohns, Diagnosed December 12, 2013, Age 3

2. Boy or girl? Year of birth?
Girl, 2010

3. Location?
Regina, Saskatchewan, Canada

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
IV antibiotics, X-Rays, Ultrasound, Colonoscopy, PICC Line, NG Tube feeding.

5. Current medications and supplements?
Azathioprine, Ranitadine (Zantac), Iron, Vitamin D

6. Failed medications and reason for failure?
None yet

7. Other medications you have experience with?
Metronidazole (Flagyl), Ciprofloxacin,

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastro

9. Special diets your child is on or has tried?
Dairy free
Gluten Free
Low residue

10. What side effects or EIM's has your child experienced?
Oral sores
Sores on extremities
Joint Pain
Itchy/red eyes
Rectal skin tag

11. Other topics of interest that you can provide support to others on?
None yet, we're still learning

My wife is on the forum (Goofychicken) and will be floating around as well
04-07-2014, 08:10 AM   #23
jjohns23
 
Join Date: Mar 2014
Location: Tampa, Florida

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.

Crohn's Disease


2. Boy or girl? Year of birth?

Girl (Makayla) 2001


3. Location?

Tampa, FL


4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.

Colonoscopy, Endoscopy


5. Current medications and supplements?

Prednisone, Azathioprine


6. Failed medications and reason for failure?

Asacol, Omeprazole, Gabapetin - combination of all caused allergic reaction




7. Other medications you have experience with?


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.

Pediatrician, Pedi-Gastroenterologist


9. Special diets your child is on or has tried?

Low residue


10. What side effects or EIM's has your child experienced?

Skin Tags, anal/rectal pain, abdominal pain


11. Other topics of interest that you can provide support to others on?
04-18-2014, 08:39 AM   #24
Daltonsmom
 
Join Date: Apr 2014

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.

Crohn's Disease and UC- February 2009

2. Boy or girl? Year of birth?

Boy 2001

3. Location?

Virginia

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy- MRI, UGI with small bowel follow through



5. Current medications and supplements?

Remicade, Vitamin D, childrens multivitamin with Iron---now Iron supplements

6. Failed medications and reason for failure?
Asacol
Azathioprine
Methotrexate--- symptoms increasing, despite treatment

7. Other medications you have experience with?

Prednisone, Rowasa,

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.

GI


9. Special diets your child is on or has tried?
none yet


10. What side effects or EIM's has your child experienced?
fatigue, anemia, mouth ulcers,


11. Other topics of interest that you can provide support to others on?

--------------------------------------------------------------------------------
05-02-2014, 10:56 PM   #25
Cinder21
 
Cinder21's Avatar
 
Join Date: May 2014
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD. Crohn's 2012
Ulcerative Colitis 2012

2. Boy or girl? Year of birth?
Boy Mar 2000


3. Location?
Melbourne Florida


4. What procedures has your child experienced? i.e. colonoscopy, PICC line,
etc.
Colonoscopy 2012, 2014
Endoscpopy 2012,2014
CT scan with contrast
upper GI series
Lab Blood


5. Current medications and supplements?
MP6 50mg, Ameprazole 40mg., Prednisone
omega-3, Multi-V,

6. Failed medications and reason for failure?
MP6 still evaluating/but still flare-ups
Budesonide 3mg did not work for flare-ups

7. Other medications you have experience with?


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gastro., Psych., Primary Pediatrician

9. Special diets your child is on or has tried?
..High Fiber

10. What side effects or EIM's has your child experienced?
moodieness

11. Other topics of interest that you can provide support to others on?
lack of interest in food
weight loss
05-11-2014, 10:01 PM   #26
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
1. Seizures 2004, Crohn's 2013
2. girl, May, 1999
3.Alaska
4. MRE, colonoscopy, video camera, NG tube
5. 6mp, Culturelle, zinc, vitamin D, digestzen (essential oil capsules)
6. NG tube - "never again", bad experience, traumatic; desipramine and Periactin- both led to seizures after first dose
7. About 4 anti-seizure meds, Prozac
8. Pediatrician, pediatric G.I., pediatric neurologist, psychologist
9. Gluten-free diet, has tried many different diet combinations which have not helped except for the gluten-free aspect
10. Seizures, enthesitis, anxiety, insomnia, mouth sores
11. Other topics of interest: use of essential oils, nutrition as it relates to neurological complications like seizures
07-05-2014, 11:21 PM   #27
momfrompa
 
Join Date: Jul 2014
Location: Lehighton, Pennsylvania

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.

Crohn's: Aug. 2013


2. Boy or girl? Year of birth?

Boy: Feb 2000

3. Location?

Northeastern PA


4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.

Colonoscopy
Endoscopy
DEXA scan
Lactose Intolerance
Fecal tests
Blood tests

5. Current medications and supplements?

Starting Remicade on Monday (7/7) -- and worried (me anyway, son is handling pretty well)
Pentasa
Prednisone
Multivitamin


6. Failed medications and reason for failure?

Imuran: Just stopped. General not feeling well; decrease appetite and weight loss

7. Other medications you have experience with?

Zofran
Tylenol with codeine
Miralax


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.

Ped. GI
Family doc

9. Special diets your child is on or has tried?

Dairy free
Low fiber

10. What side effects or EIM's has your child experienced?

Skin tags
Dry skin

11. Other topics of interest that you can provide support to others on?

Not much as still new to us. However, we recently registered for a bike ride (Get Your Guts In Gear) to raise awareness for Crohn's & Colitis.
07-14-2014, 09:14 AM   #28
jamesmom
 
Join Date: Jun 2014
Location: New York

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.

Crohn's disease: stomach, terminal ileum, cecum, ascending colon 6/26/14
Iron deficiency

2. Boy or girl? Year of birth?

Boy, 2002

3. Location?

New York

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.

Blood tests 5/19/14 & 7/11/14
TB skin test 5/19/14
Chest X-ray 5/19/14
Stool tests 6/9/14
Endoscopy/colonoscopy 6/18/14
MRE planned 7/22/14

5. Current medications and supplements?

Colazal, 750mg 3X/day 6/20/14
Budesonide, 9mg daily 6/27/14
6MP, 37.5mg daily 6/29/14
Slow FE adult iron supplement 6/23/14
Centrum Children's Multivitamin

6. Failed medications and reason for failure?


7. Other medications you have experience with?


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.

Pediatrician, Ped. GI

9. Special diets your child is on or has tried?


10. What side effects or EIM's has your child experienced?

Fevers, weight loss, joint pain, irritability


11. Other topics of interest that you can provide support to others on?

New to this, but happy to share whatever I learn
08-20-2014, 05:51 PM   #29
Monnipenni
 
Join Date: Jul 2014
Location: British Columbia
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.

Originally diagnosed with Colitis in March 2013. Diagnosed with Crohns in July 2014.

2. Boy or girl? Year of birth?

Boy 1996


3. Location?

Vancouver, BC

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.

Colonoscopy, Several MRI's, Blood Transfusion, Surgery to drain fistulas

5. Current medications and supplements?

Remicade, Imuran, Prednisone, Calcium, Vitamin D and Iron

6. Failed medications and reason for failure?

Pentasa - Worked ok for a year and then had a really bad flare

7. Other medications you have experience with?


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.

Gastroenterologist, surgeon

9. Special diets your child is on or has tried?


10. What side effects or EIM's has your child experienced?


11. Other topics of interest that you can provide support to others on?

I am really new to this stuff but we have been through ALOT in the last couple of months. I have found this site very helpful and supportive. I would like to offer support back
08-24-2014, 11:44 PM   #30
Hope345
Forum Monitor
 
Hope345's Avatar
 
Join Date: Oct 2012
Location: eugene, Oregon

My Support Groups:
1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.

Crohns 1/2012
changed to UC 1/2014
2. Boy or girl? Year of birth?

girl/1998


3. Location?
Eugene, OREgon

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy, endoscopy, MRI, CT scan, bone density, MRI, MRE, iron infusions, vitamin infusions

5. Current medications and supplements?
Herb remedies, vitamins, probiotics, iron, fiber,

6. Failed medications and reason for failure?
Asacol: didnt seem to do anything
Mercaptopurine: ""
Prednisone: second dose didnt seem to eliminate symptoms
Remicade x 13 treatments: I believe it was needed, but never produced long term remission
Imuran: wish we would have had in the begining with Remicade, but by 13th treatment: it was enough


7. Other medications you have experience with?
flagyl, mesalamine enemas, cortifoam


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
GI, eye doctor, naturalpath
9. Special diets your child is on or has tried?
lactose free, low residue, current: anti inflammation diet (no dairy or wheat)

10. What side effects or EIM's has your child experienced?
Prednisone: major water retention, psychological issues, skin break out
EIM: bleeding, eye inflammation, anemia, skin rashes


11. Other topics of interest that you can provide support to others on?
naturalpath, anti inflammatory diet, iron and vitamin/mineral infusions,
__________________
Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
Reply

Crohn's Disease Forum » Parents of Kids with IBD » About Crohn's Forum Families
Thread Tools


All times are GMT -5. The time now is 02:33 AM.
Copyright 2006-2017 Crohnsforum.com