About Crohn's Forum Families

[Mehita]

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?

 

[Mehita]

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

 

[Jmrogers4]

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

 

[DanceMom]

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

 

[greypup]

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

 

[Brian'sMom]

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

 

[upsetmom]

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

 

[DustyKat]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Sarah - Crohn’s 10th July 2006
Matt - Crohn’s 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 IV’s.
Matt - Ultrasounds x4, CT x(?)5, CTE, upper and lower scope, pig tail drain (3 months), multiple IV’s, ileocaecal resection with the associated tubes, drains and IV’s.

5. Current medications and supplements?
Sarah - Imuran, B12, Folic Acid, Vit D, Psyllium Husk…not 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.

 

[Skymama]

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

 

[imaboveitall]

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

 

[Maya142]

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

 

[CrohnsKidMom]

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!

 

[Clash]

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

 

[SupportiveMom]

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

 

[kimmidwife]

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.

 

[Catherine]

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

 

[CDJ]

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?

 

[CarolinAlaska]

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?
?

 

[Zoodles]

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

 

[Fiera]

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.

 

[izzi'smom]

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?

 

[Santafish]

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

 

[jjohns23]

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?

 

[Daltonsmom]

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?

--------------------------------------------------------------------------------

 

[Cinder21]

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

 

[CarolinAlaska]

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

 

[momfrompa]

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.

 

[jamesmom]

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

 

[Monnipenni]

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

 

[Hope345]

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,

 

[Shellyc]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Ulcerative colitis may 2014
Crohns July 2014

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

3. Location?
Washington state

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

5. Current medications and supplements?
Imuran starting humira injections this week

6. Failed medications and reason for failure?

Apriso- not strong enough
7. Other medications you have experience with?
Prednisone, Prilosec,


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Gasternologist, primary doctor, general surgeon

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

10. What side effects or EIM's has your child experienced?
Rectal bleeding, severe stomach pain, nausea, headaches

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

 

[Bagx9]

1. Diagnosis and date of diagnosis?

*Crohn's Disease, May 2011

2. Boy or girl? Year of birth?

*Girl, January 1997

3. Location?

*We travel the USA full-time since 2/2012 with our Christian music mission.

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

*Colonoscopy, PICC line.

5. Current medications and supplements?

*Imuran and oral iron.

6. Failed medications and reason for failure?

None, so far, thank God.

7. Other medications you have experience with?

*Prednisone.

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

*Pediatric gastroenterologist.

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

*SCD since 10/2013 with success, thank God.

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

*Irregular menstruation, weight gain, joint pain, muscle cramps, small rashes, yellow skin, bloat.

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

*Only hand holding, SCD, Christian prayer and encouragement.

 

[ChampsMom]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Mild Tourette's in 2003; Crohn's in 2010.

2. Boy, 1996.

3. Location: Maryland

4. What procedures has your child experienced?
colonoscopy, endoscopy, NG, bone scan

5. Current medications and supplements?
Pentasa, cetirizine, prevasaid, (B-12 only before games)

6. Failed medications and reason for failure?
Lialda - (tried it as a substitute for Pentasa, but it caused lower abdominal cramps & exhaustion)

7. Other medications you have experience with?
N/A

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

9. Special diets your child is on or has tried?
Lactose free, no nuts, low fiber, no hard raw veggies (carrots, celery, etc.)
, no seeds, low fried, low spicy

10. What side effects or EIM's has your child experienced?
Stiff joints, exhaustion, late bloomer (but he has bloomed now!!)

11. Other topics of interest that you can provide support to others on?
504 Plans, Home & Hospital Instruction, Prayer

 

[cre]

1. Diagnosis and date of diagnosis?
-Crohn's Disease
-March 2014


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

3. Location?
-Louisana

4. What procedures has your child experienced?
-Colonoscopy -Endoscopy -Ultrasound -IV infusions -CT Scan -Biopsies -X-rays

5. Current medications and supplements?
-Humira -Azathioprine -Allopurinol -Iron

6. Failed medications and reason for failure?
-Remicade, developed antibodies

7. Other medications you have experience with?
-Prednisolone -Vitamin D -Lansoprazole -Calcium Carbonate -Probiotics
-Zinc

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

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

10. What side effects or EIM's has your child experienced?
-Absecess -Nausea -Weight loss -Abdominal pain -Skin rashes- Vomiting
-Mouth Ulcers - Fissures -

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

 

[mom4]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
may 2014

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

3. Location?
Montreal, Quebec

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

5. Current medications and supplements?
Imuran, Entocort, will stopping Imuran and beginning Remicade at the beginning of June

6. Failed medications and reason for failure?
Methotexate injections CRP started to go up, Imuram, recent MRI showed active inflamation
and CRP is going up. Although he hasn't begun to show symptoms yet.
7. Other medications you have experience with?


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

9. Special diets your child is on or has tried?
none, he won't accept

10. What side effects or EIM's has your child experienced?
Vomiting from the Mtx injection

11. Other topics of interest that you can provide support to others on?
Getting our kids through this the best way we can. Learning to take the low points in stride.

 

[Manisaj]

Hi Fiera

My daughter was diagnosed in 2013 in KL with CD as well. Pls feel free to contact me anytime. We find lots of improvement after being on a gluten free diet. And we do this for all of us collectively as a family which makes it a lot easier to be GF.

MS

=========

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.

 

[Lizknits99]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohns 2/06/15
Chronic Alergic Rhinitis

2. Boy or girl? Year of birth?
Boy 2002

3. Location?
Sydney

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Endoscopy, Colonscopy, MRE, xrays, Bloods

5. Current medications and supplements?
Nexium for reflux
Just started EEN
Avimist


6. Failed medications and reason for failure?
N/A


7. Other medications you have experience with?
N/A


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

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

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

11. Other topics of interest that you can provide support to others on?
EEN and compliance of a 12 year old

 

[GirlwiththeCurl]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Autoimmune hepatitis
Primary sclerosing cholangitis
PSC-related inflammatory bowel disease (type not yet specified)


2. Boy or girl? Year of birth?
Girl, 2009

3. Location?
Wyoming

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Liver biopsy, upper GI endoscopy, sigmoidoscopy


5. Current medications and supplements?
Prednisone (almost done with it!)
Imuran
Flagyl
Omeprazole
Ursodiol

6. Failed medications and reason for failure?
None yet


7. Other medications you have experience with?


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


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


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


11. Other topics of interest that you can provide support to others on?
I'm a newbie, but if someone (or their child) has liver problems as well as IBD, I am learning a lot about it.

 

[Martin's family]

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

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

3. Location?
London, UK

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy, Feacal Transplant ( FMT)

5. Current medications and supplements?
Adalimumab ‎injection, 20mg of Prednisolone

6. Failed medications and reason for failure?
Sulphasalazine - no respond
Azathioprine for 8 months - not effective, side effects like feeling seek and hair loss
Prednisolone - not effective
7 Infliximab infusions - the last one not effective

7. Other medications you have experience with?
20mg of Prednisolone
Adalimumab ‎injection

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

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

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


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

 

[Food4Thought]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
-perianal abscess - 3/2012
-Failure to Thrive - 12/2015 (at 12 years old!)
-Crohn's - 1/25/2016

2. Boy or girl? Year of birth?
Boy, 2003

3. Location?
Ventura, California

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
CT scan (for migraine that acted like a stroke)
blood and stool labs
MRE
Colonoscopy
Endoscopy
Fistula Surgery with Seton

5. Current medications and supplements?
Remicade (3rd infusion 3/7/16)
Methotrexate (10mg weekly)
Folic Acid (1 mg daily)

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

7. Other medications you have experience with?
iron supplements, Prozac, probiotics

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
GI, pediatric surgeon (for fistula repairs), primary care, nutritionist, hematologist (for injections)

9. Special diets your child is on or has tried?
(pre-diagnosis)
Gluten-free (wheat allergy)
experimented with dairy-free, GAPS, and SCD, but never was strict with them.
(post-diagnosis)
trying to go strict Autoimmune Protocol. Almost there, once we get rid of the Hershey's Kisses. :shifty-t:

10. What side effects or EIM's has your child experienced?
fissures
complex migraines (I'm convinced this is related somehow)
anemia
severe fatigue
perianal abscess --> fistula
eczema
dishydrotic eczema

11. Other topics of interest that you can provide support to others on?
I'm brand new to CD, but I've had an interest in food for a number of years (celiac in the family led me to gluten-free, and I've since gone further down the diet rabbit hole)

 

[bs0455]

Both my kids have been diagnosed with Crohn's.

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Daughter dx with Crohn's- 2012 at the age of 13- also has fibromyalgia, chronic migraines and bladder issues.
Son dx Crohn's -2015 at the age of 14

2. Boy or girl? Year of birth?
Girl-1998- just turned 18 last weekend
Boy-2000

3. Location?
Daughter- ileum, duodenum, many ulcers throughout
Son- terminal ileum


4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Daughter- colonoscopy,MRI, pill cam, ng tube
Son- MRI, colonoscopy, ng tube, picc line


5. Current medications and supplements?
Daughter- Humira, methotrexate, Protonix, flexeril,Paxil, Vesicare,Topamax, verapamil, folic acid
Son- Remicade, methotrexate, Protonix,TPN, IV antibiotics, folic acid, zofran

6. Failed medications and reason for failure?
Daughter- Remicade had too many side effects for her.
Son- is currently a new dx and still waiting to see if meds will start working.

7. Other medications you have experience with?
n/a


8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
Daughter- GI, Rhuemy, neurologist
Son- GI

9. Special diets your child is on or has tried?
Daughter- none, what she feels the best eating, differs
Son- TPN

10. What side effects or EIM's has your child experienced?
daughter- migraine, diarrhea, body aches, mouth sores
Son- not sure yet

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

 

[BaI]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohn's 5/31/16


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

3. Location?
Cleveland, Ohio

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

5. Current medications and supplements?
Azathioprine 75 mg
Prednisone 30mg
Prilosec
Iron complex with B-12 and Folic Acid


6. Failed medications and reason for failure?
nothing yet (just started first 2 meds a few days ago)


7. Other medications you have experience with?


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

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?

 

[Tesj]

Hi I'm new to this forum. My 10 yr old son was dx in dec. 2015 with UC, after starting symptoms in Aug 15. Tried Asacol, Salofalk, oral Prednisone with no success, Prednisone in IV works a bit, Started Remicade 7.5mg/kg and had the 3 loading doses, seemed to work only for a week and the 3rd one not at all. Tried 10 mg/kg a week and a half ago and slight improvement but going downhill again

Bit discouraged and don't see the end of it. Horribly scared of the surgery. Would like to hear about other kids and their experience with UC and treatments


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

Dx with UC in December 2015 (symptoms started abruptly in august 2015)

2. Boy or girl? Year of birth?

Boy born August 2005 (almost 11)

3. Location?

Ottawa-Gatineau Region, Canada

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

2 colonoscopies, 1 MRE, 1 gastroscopies, Calprotectin level, lots of blood tests

5. Current medications and supplements?

Remicade upped dose (10 mg/kg - trying every 4 weeks)
oral prednisone for another 2 weeks then tapering down and plan to add oral Methotrexate once off Prednisone

6. Failed medications and reason for failure?

Asacol + Salofalk suppositories: improvement but not enough
Oral Prednisone: no improvement
IV Methylprednisolone: seems to help a bit but not enough to put into remission
Remicade: 7.5 mg/kg seem to work for 1 week, did the 3 loading doses, no improvement after 3rd
Trying Remicade upped dose 10mg/kg, first one on May 27th, small improvement but now (June 7) going doen again. Trying every 4 weeks, might have another one ealier....if still not working will be seitching to humira or....?

7. Other medications you have experience with?


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

Pediatric Gastro enterologist

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

tried no milk, no soy, no egg....nothing seems to work

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

Prednisone: very hungry and round face (but he actually needed that and he actually looks good with the round face)

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

Entyvio for kids?
What if Remicade fails?
Surgery (jpouch, etc.)

 

[Lizette]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Fistula in ano
Universal colitis, left more than right , but because my brother has Crohn they rule it out as crohns. March 2006

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

3. Location?
Clarkston, Michigan


4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
COlonoscopy, Endoscopy, Mri, C scan, Current Iron infusions

5. Current medications and supplements?
Pentasa 4 a day
Probiotics
Vitamin D once a week 50,000

6. Failed medications and reason for failure?
6mp not working
Flagyl and Cipro got C diff
ASacol not working

7. Other medications you have experience with?
Prednisone
Omeprazole
Proctosol
Canasa

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
pediatri
Pediatric GI
Colorectal surgeon

9. Special diets your child is on or has tried?
Gluten free no difference
Neocate supplements


10. What side effects or EIM's has your child experienced?
Puffy face with prednisone
Skin tags anal area

11. Other topics of interest that you can provide support to others on?
Anal abscess, fisures.

Michael age 17 dx at age 6 current iron infusions (anemia due to C diff)
Lizette

 

[jjlghoff]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohns-2017

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

3. Location?
Tx USA

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Colonoscopy/endoscopy, mre w/ contrast, abdominal X-rays

5. Current medications and supplements?
Nexium
Pentasa 500 mg
Elemental/EEN nutrition

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


7. Other medications you have experience with?
Otc probiotics, lactulose

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

9. Special diets your child is on or has tried?
None really. Just started a little with scd diet

10. What side effects or EIM's has your child experienced?
Nausea,stomach aches , trouble sleeping, mouth sores, fatigue

11. Other topics of interest that you can provide support to others on?
Willing to support as best as I can

 

[ewalls28]

1. Diagnosis and date of diagnosis? Crohns early 2015


2. Boy or girl? Year of birth? Girl, 17YO


3. Location? Orlando, FL


4. What procedures has your child experienced? Colonoscopy


5. Current medications and supplements? Lialda


6. Failed medications and reason for failure? Have only tried Lialda, having doubts about it though


7. Other medications you have experience with? none


8. Type of specialists your child sees? i.e. Gastro, Therapist, nutritionist


9. Special diets your child is on or has tried? Currently, dairy free, gluten free, mainly fruits. Almost everything seems to be an irritant.


10. What side effects or EIM's has your child experienced? Nausea, cramps, pain, fatigue, bloating.


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

 

[pdx]

Welcome to the forum, ewalls28! It sounds like you're wondering if your daughter's treatment is working for her. Please consider posting your own thread to the forum if you'd like to share more info, or would like some feedback from others here.

 

[Judy1000]

Thanks for this, Mehita. Finally jumping in!

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

My daughter was diagnosed November 2010


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


3. Location? Virginia, USA


4. What procedures has your child experienced?
Colonosopies.

5. Current medications and supplements?
No Crohn's meds since May (or before) 2011. Cod liver oil, Vit D, green drinks, good nutrition, probiotic/cultured foods


6. Failed medications and reason for failure?
She was on Pentasa for several months in the beginning, but the meds gave her some of the same symptoms as Crohn's so she weaned herself off. The doctor OK'd it after he saw her progress.


7. Other medications you have experience with?
When first diagnosed, she had anti-yeast meds and a run of antibiotics.

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

9. Special diets your child is on or has tried?
We made our own and it worked - started with modified Makers Diet and SCD- had to exclude trigger foods in both of those and ended up on something Paleo-ish. Basically, if you could pick it or kill it, it was food (unless it was most grains).

10. What side effects or EIM's has your child experienced?
In the beginning: joint pain, fatigue, rash, anemia, extreme loss of energy, severe weight loss, hair loss, gas, cramps, night fevers, night sweats, ileitis

11. Other topics of interest that you can provide support to others on?
Diet, nutrition, lifestyle, hope, parenting, recipes, juicing, green powders, tasty snacks, getting through the holidays, never giving up!

 

[Onlygirl73]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Undiagnosed officially (family dr says yes waiting for the GI)
Depression, Anxiety, Orthostatic Hypotension, Anorexia

2. Boy or girl? Year of birth?
Son Casey May 2001

3. Location?
Milton Ontario Canada

4. What procedures has your child experienced? i.e. colonoscopy, PICC line, etc.
Upper GI and small bowel barium testing, celiac screening

5. Current medications and supplements?
Wellbutrin, Olanzapine, vitamin D, multi-vitamins

6. Failed medications and reason for failure?


7. Other medications you have experience with?
allergic to penicillin, various antibiotics for strep (scarlet fever at age 9) prozac, ventolin for chronic cough, domperidone, quetiapine.

8. Type of specialists your child sees? i.e. Gastro, Rheumy, Psych, etc.
ped, cardio, allergist, waiting on the ped GI, psychiatrist
9. Special diets your child is on or has tried?
just getting started

10. What side effects or EIM's has your child experienced?
severe anorexia (6ft 1" - 114 lbs) joint pain, chronic cough, stomach pain

11. Other topics of interest that you can provide support to others on? anxiety and depression in kids, kidney disease (me)

 

[msep10]

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD.
Crohn's 12/2015
EDS (hyper mobility type) 2013


2. Boy or girl? Year of birth?
Boy, 2007


3. Location?
Chicago, IL

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

5. Current medications and supplements?
Humira, possibly changing to remicade
vit D
omeprazole

6. Failed medications and reason for failure?
Azathioprine - wasn't doing much

7. Other medications you have experience with?
Prednisone

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

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

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

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

 

[Carolina*]

1. Diagnosis and date of diagnosis?
Indeterminate Colitis leaning towards Crohn's, Celiac Disease, 10/17

2. Boy or girl? Year of birth?
Girl/2007

3. Location?
North Carolina

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

5. Current medications and supplements?
Lialda, GF diet, multi-vitamins

6. Failed medications and reason for failure?

7. Other medications you have experience with?
allergic to sulfa

8. Type of specialists your child sees? Ped GI, ENT

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

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

11. Other topics of interest that you can provide support to others on? Celiac Disease, hearing loss