Crohn's Disease Forum » Parents of Kids with IBD » Doing great on AZA and update.

01-31-2015, 11:54 PM   #1
Jane and Nick
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Doing great on AZA and update.

Well it has been a while since I was on the forum, so Happy New Year. Nick is doing very well on AZA and his bloods look good. He has been off all steroids for months and seems to be growing in height (slowly) and is thriving. He still gets stiffness and can become fatigued but on the whole he is doing very well.

We have had a very anxious time as my husbands lung cancer became active again and he had his whole left lung removed on the 2nd of December along with a lymph node. We were incredibly fortunate that the surgeon considered him as a candidate for surgery due to the staging of his disease being a 4. His lymph node came back clear and his brain mets are still gone, he doesn't need residual chemo or radiation and we are all getting used to a new normal.

In the past anxiety has been a trigger for Nicks CD so I was expecting a flare during the stress of his dads surgery and ICU stay, but he has been wonderful ! So thankful for good health.

Nick had a enlarged lymph node in his neck a few weeks ago that freaked me out ! It has gone down in size and we are keeping a close eye on it.

Spending today catching up on every ones updates and posts. Wishing you all good health and remission.
DOB 13/8/2001
Height 5ft 2" 48 kg
Salofalk x3 twice a day
Imuran 100mg
02-01-2015, 12:04 AM   #2
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Join Date: May 2010
Location: New South Wales, Australia
So brilliant to hear that Nick is doing well! May it last a lifetime Jane and keeping my fingers, toes and everything else crossed that the lymph node is nothing more than a passing anomaly!

I am so sorry to hear about what your husband has through, what a stressful and anxious time it has been for you all. Sending you much luck, well wishes and healing thoughts that he continues to go from strength to strength. Good luck!

So fab to hear from you and thanks for the update!

Dusty. xxx
Mum of 2 kids with Crohn's.
02-01-2015, 05:22 AM   #3
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Location: Falkirk, United Kingdom

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Great news. Hope Nick continues to do well, that's great he kept well over your husbands surgery. Hope your husband keeps well now too.
02-01-2015, 08:44 AM   #4
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God bless you all! Glad you popped in to share the good news. Praying it just gets better and better for all!
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
02-01-2015, 08:54 AM   #5
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Crohn's Disease
DX 1978 (12 yrs old)
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02-01-2015, 09:16 AM   #6
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I am glad to hear it! I hope the swollen lymph node was just a passing virus.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-01-2015, 09:40 AM   #7
Jane and Nick
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Me too ! Our adult GI, (we don't have access to a pedi) said not to worry if it doesn't go down we will take it out !
We are really hoping it doesn't come to that, especially after what we have been through with his dads cancer.
Fingers crossed.
02-01-2015, 03:11 PM   #8
my little penguin
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Did they do bloodwork??
When DS has swollen lymph nodes or extra lumps they ran bloodwork quickly ...
Then no worries
DS - -Crohn's -Stelara -mtx
02-01-2015, 05:44 PM   #9
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Glad to hear the good news about him and that his Dad is doing better as well!
Hopefully the lymph node is nothing.

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.
02-01-2015, 06:10 PM   #10
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Location: Michigan

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I'm so happy for a good update on your dear son.
I also pray your husband continues to improve.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
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,

Crohn's Disease Forum » Parents of Kids with IBD » Doing great on AZA and update.
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