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Crohn's Disease Forum » Parents of Kids with IBD » Update on Dusty's Matt


 
07-27-2015, 12:23 PM   #1141
Jenn
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Glad Humira seems to be working for him. My son had high eosinophils for about 6 months last year. The GI wasn't too concerned. He has seasonal allergies and his asthma was bothering him more than usual too. It's back to normal at the moment. Hope your son has a happy and healthy Golden year.
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
07-27-2015, 08:29 PM   #1142
SupportiveMom
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Late to the post, bUT happy Belated birthday! 22.. a fine year! Hope it is the best one yet.
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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
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08-01-2015, 07:16 AM   #1143
DustyKat
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Just back from the follow up with the consultant and the IBD nurse and they are happy with Matt's progress. He has now been on Humira for one month.

His flare up symptoms were never severe in the scheme of things so I think obvious in your face improvements will be hard to pick. Matt felt he didn’t really feel much different but when the right questions were asked and he thought about it he has realised there have been changes for the better. I too have seen positive changes…Looks better (better colour in his face and the dark circles under his eyes are gone), less fatigued, better appetite and no pain.

Next consult is the 24th September, that will be a more extensive follow up as it is the major review for his Humira approval. Hoping all continues to go well until then!

Onwards and Upwards!
Dusty. xxx
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08-01-2015, 12:27 PM   #1144
Clash
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That's great C has a follow up the 18th. It will be 6 mos on humira for him. We too won't really have anything outward to gage since he's asymptomatic. He'll have repeat scope done in late Oct for that. But his rheumatologist was inclined to believe there was improvement on the joint side.

So hope Matt continues going strong with continued success!
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

Last edited by Clash; 08-01-2015 at 12:28 PM. Reason: Spelling
08-01-2015, 01:00 PM   #1145
Sascot
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Great news. Hope it keeps going well
08-04-2015, 11:50 AM   #1146
awmom
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That is such good news! I think sometimes it's difficult for them to see the changes in themselves and it is more obvious to us...especially the skin colour and appetite! So glad he is doing better.
08-04-2015, 11:59 AM   #1147
Tesscorm
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So great that all is going well for him!!!
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Tess, mom to S, 22
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
08-06-2015, 06:07 PM   #1148
kimmidwife
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Great news! Hope things continue along this way!!!
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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.
03-03-2016, 06:38 AM   #1149
DustyKat
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Finally back for an update. Things have been a tad all over the deck at our end, hence the absence. *sigh*

Anyway, looking at the date of my last post means we have had three further GI consults since then with the last being the 18th February. As far as Matt goes things have been pretty stable. I have had niggly feelings that there has still been room for improvement but with nothing to base those feelings on. His Iron studies were trending toward iron deficiency anaemia in October and after Matt giving a flat out refusal to have an infusion, very odd for him, he did end up conceding to have his Ferinject infusion a couple of weeks later. This improved his numbers but didn’t really improve his feelings of fatigue.

He has continued to cruise along and remains on Humira. I have been tossing up a couple theories over the past few months for my feelings and they include: Humira taking the extreme period of time to fully kick in. The stress of completing his thesis, Matt doesn’t really buy into this one but I think he may not fully appreciate the correlation between stress/fatigue/health. And finally the stress of having Sarah living at home, they do get on famously but it really is a case of polar opposites…Extroversion meets Introversion…and both at the extreme ends of the spectrum.

However, last night he did say to me that he has felt better and more energised over the past couple of weeks. The things to change in that time are his thesis is completed, or close to it, and Sarah has moved out...to Japan! He is meant to move away to continue his studies at the end of this month but I just don’t see him meeting that deadline.

His bloods are looking fab, all well within normal range. Even his lymphocytes have crept back into normal territory, the first time in years.

I have continued with him having FC’s done. I know I stated previously in the thread that I was disappointed with the first FC result as they only provided a number of >300. I did end up sending an email to the company stating why I was displeased with the way they reported their results. His result two months after starting Humira, September last year, was 281 and his result at the end of last month was 24. Interestingly, when I received the results last night his very first FC, done in May last year, now shows an actual numerical value: 2318 u/ug.

Dusty. xxx
03-03-2016, 11:58 AM   #1150
CarolinAlaska
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I have continued with him having FC’s done. I know I stated previously in the thread that I was disappointed with the first FC result as they only provided a number of >300. I did end up sending an email to the company stating why I was displeased with the way they reported their results. His result two months after starting Humira, September last year, was 281 and his result at the end of last month was 24. Interestingly, when I received the results last night his very first FC, done in May last year, now shows an actual numerical value: 2318 u/ug.

Dusty. xxx
What! So glad they are doing so much better!
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-03-2016, 01:53 PM   #1151
DougUte
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Glad to hear Matt is doing well. Sounds like good news to me.
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
03-03-2016, 01:54 PM   #1152
Maya142
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Wow! What a drop in his FC. So glad he is doing so well!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
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Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
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03-03-2016, 02:06 PM   #1153
kimmidwife
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Glad to hear he is doing so well!
03-03-2016, 05:22 PM   #1154
Sascot
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Glad things have settled down, that FC result is fab. Glad things are going well. Sarah moved to Japan? Wow, my daughter would love to go to Japan!
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