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Crohn's Disease Forum » Parents of Kids with IBD » Serum sickness and a full introduction to my son *Please read*


04-09-2013, 01:26 PM   #1
Twosons
 
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Serum sickness and a full introduction to my son *Please read*

Ev developed what his GI called serum sickness. During his last infusion he said he felt "odd" about halfway through. As infusion went on he started slowly with a headache, then fever, rash and finally said he felt as if he was going to get sick. He was being monitored. He never acted in a way that concerned anyone. He was almost matter of fact about mentioning not feeling well.

Now Ev is due to start Humira next week. I'm so exhausted from this stupid disease. I hate seeing my son struggle with so much pain. I've reached the point where I've almost stopped talking to people. I know its not healthy and yet I seem to be putting up walls. I float in and out of the forum and I'm quite sorry for that. I wish I had the strength of our children when it comes to dealing with this disease. I just don't

I felt it was time to be a little more open here. I know have a trust issue due to being judged by family for our decisions we've made concerning our Ev. Below is a link to let you meet my beautiful son Evan. Its his website he's made to share his journey.


http://www.ihateevansguts.net/

Thank you for all being so caring and compassionate. This forum is the only place I feel safe.
04-09-2013, 01:35 PM   #2
DanceMom
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Your son really seems amazing and I got very teary reading his story. I'm sorry your family is so judgmental, but it sounds like you have done a wonderful job with your son. Hope that things get better for him really soon.
04-09-2013, 01:40 PM   #3
CarolinAlaska
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What med did he react to with the infusion?
I totally understand about putting up walls. I also understand about not coming here. If you are having a hard time dealing with your son's IBD, surrounding yourself with other people's IBD issues can be overwhelming. Come when you need us. Come when you are feeling stronger. Stick to your one thread if you need to. No condemnation here. We've all been there.

Thanks for posting Evan's blog. I'd like to see it. I have a blog for my daughter too, but I keep it, not her. Maybe I'll invite her to post on it too.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. 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.
04-09-2013, 01:41 PM   #4
Clash
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What an awesome son you have!! I do hope the Humira brings about remission for him and does it quickly!

I understand your exhaustion, it seems as if CD has no rhyme or reason, at times attacking on all fronts with visible pain and suffering then at others silently mounting attacks while we are none the wiser. Your son seems to be so strong in spirit and you must be so proud of him! I do hope the medication works quickly.
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Clash
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
04-09-2013, 01:55 PM   #5
CarolinAlaska
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Your son has a great little blog going. I kept getting the chills as I read his story... No wonder you are having such a hard time. You've been through a lot. He seems a wonderful boy.
04-09-2013, 03:03 PM   #6
Johnnysmom
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I put up walls with my friends and family too when my son was diagnosed. No one seemed to understand the decisions you have to make unless they have had to deal with them and lived them. And let's face it, there are no "good" options here. It's hard to feel good about your choices when you are picking the lesser of two evils most of the time. And doubly hard when you have to do it for someone else and they are the ones who have to absorb the risks involved. It pretty much sucks, and anyone who judges you just doesn't understand. But we do, and you are safe here. ((((((Hugs)))))))
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Dx Oct 11 2011 Crohns disease
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04-09-2013, 03:55 PM   #7
Twosons
 
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What med did he react to with the infusion?
I totally understand about putting up walls. I also understand about not coming here. If you are having a hard time dealing with your son's IBD, surrounding yourself with other people's IBD issues can be overwhelming. Come when you need us. Come when you are feeling stronger. Stick to your one thread if you need to. No condemnation here. We've all been there.

Thanks for posting Evan's blog. I'd like to see it. I have a blog for my daughter too, but I keep it, not her. Maybe I'll invite her to post on it too.
He was on Remicade. From the start things seemed troublesome. After every infusion it seemed he was very worn out, achy, extra nauseated and had what he called "uncomfortable skin". Our GI didn't seemed concerned though until this last time.
04-09-2013, 04:21 PM   #8
my little penguin
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My DS had issues with his last infusion as well. So he will be starting humira too this next go around.

AS others have said- feel free to come here as little or as much as you need.
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04-09-2013, 08:18 PM   #9
AZMOM
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Twosons - what an amazing young man you've been blessed with.....he has a beautiful heart!

You come and go as you need to. We all wax and wane in terms of forum time. Sometimes the need for kindred spirits is overwhelming and at other times its all too much.

Big hug,

J.
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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
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-09-2013, 08:56 PM   #10
ChampsMom
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Bright! Athletic! AND has a testimony!! Sounds like a winner (and much like my own son - smile)... My Alex is 16 now and plays ice hockey, baseball and has been assisting coach his younger brother's soccer team for the last 4 years I love that Evan blogs for himself - Alex journals a bit, but I think this is a great idea.

I pray things start looking up for him and you...
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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)
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04-12-2013, 05:15 AM   #11
DustyKat
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I am so sorry to hear about all that Evan is going through...and you too Mum...

No matter what your family think of the decisions you have obviously done a marvellous job of raising a delightful young man! Well done!

I too hear you about the walls hun. It is often like being a stranger in a foreign country where you don't speak the language, it can be both frustrating and isolating. You try but as time goes on and little progress is made it is easier to bear if you build a fortress around yourself. The walls help to block out the hurt, fear and heartbreak.

You do what is right for you Mum and whatever it is that gets you through this. You are among kindred spirits here where absences and silences are never awkward or cause for apology but rather are understood and respected.

Dusty. xxx

Last edited by DustyKat; 04-12-2013 at 05:50 AM.
04-12-2013, 11:22 PM   #12
Hope345
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Twosons,

Your son is such an inspiration. I love his spirit and hope only the best for him.

He is blessed to have such a loving caring mother who is doing the very best for him.

You have all of our support!!!
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
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Crohn's Disease Forum » Parents of Kids with IBD » Serum sickness and a full introduction to my son *Please read*
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