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


 
09-02-2014, 07:37 PM   #31
Shellyc
 
Join Date: Sep 2014
Location: Glenoma, Washington

My Support Groups:
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?
10-14-2014, 09:38 AM   #32
Bagx9
 
Join Date: Oct 2014
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.
04-14-2015, 07:45 PM   #33
ChampsMom
Senior Member
 
ChampsMom's Avatar
 
Join Date: Mar 2011
Location: North East Coast - USA

My Support Groups:
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
__________________
Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Prayer
Priesthood Blessings
04-16-2015, 11:36 AM   #34
cre
 
cre's Avatar
 
Join Date: May 2014
Location: Hammond, Louisiana

My Support Groups:
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?
__________________
~Crohn's
~Son Dx March, 2014 @
2 years 10 months old
~currently on Humira, Imuran, Allopurinol, Lansoprazole, Zinc
~previously on Remicade infusions every 8 weeks
05-11-2015, 08:46 PM   #35
mom4
 
mom4's Avatar
 
Join Date: May 2015
Location: Montreal, Quebec

My Support Groups:
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.
05-16-2015, 11:59 AM   #36
Manisaj
 
Join Date: May 2015
Location: KL, Malaysia
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.
06-18-2015, 12:17 AM   #37
Lizknits99
 
Join Date: Jun 2015
Location: Sydney, New South Wales, Australia

My Support Groups:
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
09-24-2015, 11:43 AM   #38
GirlwiththeCurl
Senior Member
 
GirlwiththeCurl's Avatar
 
Join Date: Jun 2015
Location: Wyoming
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.
__________________
Dx
Primary sclerosing cholangitis
Autoimmune hepatitis
PSC-related inflammatory bowel disease

Medications
Azathioprine 20mg
Flagyl
Ursodiol 125 mg x2
Concerta 27mg (ADHD)
11-05-2015, 08:57 AM   #39
Martin's family
 
Martin's family's Avatar
 
Join Date: Nov 2015
Location: London, United Kingdom
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?
03-09-2016, 09:42 PM   #40
Food4Thought
 
Food4Thought's Avatar
 
Join Date: Mar 2016
Location: Ventura, California
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.

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)

Last edited by Food4Thought; 03-09-2016 at 11:23 PM.
04-23-2016, 04:15 PM   #41
bs0455
 
Join Date: Apr 2016
Location: Portage, Wisconsin
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?
06-06-2016, 08:09 AM   #42
BaI
 
Join Date: Jun 2016
Location: Cleveland, Ohio

My Support Groups:
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?
06-08-2016, 11:29 AM   #43
Tesj
 
Join Date: Jun 2016
Location: Ottawa, Ontario
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.)
07-11-2016, 09:06 PM   #44
Lizette
 
Join Date: Mar 2016
Location: Michigan

My Support Groups:
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
05-27-2017, 12:05 PM   #45
jjlghoff
 
jjlghoff's Avatar
 
Join Date: May 2017
Location: Wichita Falls, Texas
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 😊
09-17-2017, 07:23 PM   #46
ewalls28
 
ewalls28's Avatar
 
Join Date: Sep 2017
Location: Oviedo, Florida
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?
09-18-2017, 10:47 AM   #47
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
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.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
09-20-2017, 10:26 PM   #48
Judy1000
 
Judy1000's Avatar
 
Join Date: Sep 2015
Location: Virginia
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!
__________________
________________________________

Daughter diagnosed with severe Crohn's in Nov. 2010.

Past meds: Pentasa for less than 6 months when first diagnosed (while pursuing natural healing).

Current meds: NONE

symptom-free, healing and maintenance through whole foods, nutritional supplements, and lifestyle.
09-25-2017, 03:52 PM   #49
Onlygirl73
 
Join Date: Sep 2017
Location: Ontario Canada
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)

Last edited by Onlygirl73; 09-25-2017 at 03:55 PM. Reason: more details
09-26-2017, 12:56 PM   #50
msep10
 
Join Date: Sep 2017
Location: Highland Park, Illinois
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?
12-04-2017, 10:45 AM   #51
Carolina*
 
Join Date: Oct 2017
Location: North 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
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