Crohn's Disease Forum » Parents of Kids with IBD » Mini update - Growth!


06-04-2014, 12:07 AM   #1
Mehita
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Mini update - Growth!

So happy! At his last Remi infusion on May 30th, DS is at the 20th percentile for weight and 11th for height. This is the highest he's ever been for either measurement since dx six years ago. Back then he wasn't even on the charts.

All his labs continue to be in the normal range and we haven't seen any notable side effects from Remicade. The fatigue he has had at week 6 is always explained away by something else. This last cycle wasn't bad at all. I'm not going to freak out yet, but even though his labs have been normal, they have been creeping up within the normal ranges. I don't know if that means anything, but it's on my radar. My husband pointed out that labs are drawn BEFORE each infusion, so it could just be indicating that it's time for a refill.

Oddly, his best friend's little sister was just dx'd with influenza B today. Needless to say, we're keeping our distance. Influenza B in June!

We did the Take Steps walk last weekend and had a lot of fun. The best part? Seeing him run around with the other kids playing frisbee. I just kept pinching myself.

For the summer I've decided to take a break from probiotics for a bit. Tempted to drop the Vit D too seeing as he'll be outside a lot now, but not sure. Any thoughts on that? We'll be checking vitamin levels at his June 16th GI appt. I will start everything back up in mid to late July before we sit on a germy airplane for 18 hours.

Now that I've shared all this good news, I probably pissed off the flare fairies. Hoping not to be posting from the hospital next week!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-04-2014, 06:29 AM   #2
JoFowler
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My Dr. says not to drop Vit D. We use sunscreen to block the sun and she believes that we would not get enough Vit D from the sun even if we didn't. I went to Florida for a week the first year of taking Vit D and didn't take any that week. I just happened to have bloodwork done when I got back and my levels had dropped quite a bit!
06-04-2014, 07:28 AM   #3
Johnnysmom
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Great news!!

If he starts showing symptoms of influenza B, tamiflu worked great for Johnny this year. His sister had influenza B and they started him on the preventative dose and he never got it. She was on it within 24 hours and was better the next day! Hopefully you can just dodge that one!
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Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
06-04-2014, 07:50 AM   #4
Tesscorm
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Great news! I can see you beaming!!

FWIW, S's labs have often moved up and down (even popping outside of normal ranges) since being on remicade but they've always returned back to normal, so the moves you're seeing within normal probably mean nothing.

S also stays on vit D throughout summer.

As far as the flu... S's roommate was diagnosed with mono in November , S didn't catch anything. S did have strep a few weeks ago, luckily mid-remi cycle (so no delays in infusion), took his antibiotics and all was fine. Hopefully, the flu will be a non-issue!

Keep enjoying the good times!
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Tess, mom to S
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-04-2014, 08:18 AM   #5
Farmwife
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Great news about the growth.
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
06-04-2014, 11:58 AM   #6
Maya142
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Wonderful news ! Hope it lasts forever!!
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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
06-04-2014, 07:00 PM   #7
Brian'sMom
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Great news!!! Growth and being "normal" and running around is wonderful news.
We go on the walk in our town this weekend.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
06-05-2014, 12:41 PM   #8
araceli
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:yoshiju mpjoy:Wonderful news.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
06-05-2014, 01:11 PM   #9
AZMOM
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Awesome!

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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
06-05-2014, 05:02 PM   #10
SupportiveMom
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So wonderful to read! Growth is a fantastic positive!!! I am thrilled he was out enjoying Take Steps. You deserve some positive news. May it continue and you ate able to keep the fairies at bay!

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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 ☆
06-11-2014, 04:44 PM   #11
Niks
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Fabulous news!!!!
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Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
Sacral Nerve Stimulator fitted Nov 17.



Peristeen Irrigation every day.
Self Catheterisation
Citramag/Picolax

Waiting for bowel stimulator!
06-14-2014, 10:48 PM   #12
kimmidwife
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Great news!!! So happy to hear!!!!
__________________

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.
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