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Crohn's Disease Forum » Parents of Kids with IBD » New Diagnosis of Crohn's for son


 
03-01-2013, 07:25 PM   #1
lordnate
 
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New Diagnosis of Crohn's for son

Hi ,

I am new to this forum. My son was just diagnosed with Crohn's disease today after many weeks of severe diarhhea and extreme stomach pain. After a colonoscopy, endoscopy of the esophagus and finally a small bowel through test the doctor found a inflammed area in his small intestine. The radiologist and doctor confirmed it was Crohns. THis is an overwhelming diagnosis as a mother and so worried for him.

Tracey
03-01-2013, 07:37 PM   #2
Farmwife
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Hello and welcome Tracey,
I'm so sorry about your son's dx. I happy though you found your way here.

Can I ask where his Crohns is located?
What meds is he on?
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I'm mom to............... Little Farm Girl 8 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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-01-2013, 08:18 PM   #3
kimeric
 
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Wow this must be extremely scary for you. Get all the information you can (you've come to right place) because most GPs can't provide you with these answers. Just remember that he will not always feel the way he does right now. I've had Crohn's for 22 years. The first few years were very difficult as I was trying to figure out what I could and couldn't do/eat. I then went into remission for over 15 years. Yes I did have bouts of diarrhea and stomach pains in between but nothing compared to what I felt like in the beginning. Hang in there mom and things will not always look so scary.
03-01-2013, 08:29 PM   #4
KWalker
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Hello and welcome to the forum! It is normal that you feel worried and overwhelmed but with a good doctor and the right treatment this disease can be much easier. I'm glad you found this forum as a new support system for your son with crohns because there is a mass amount of very informative members who can tell you just about anything you need to know. I was also going to ask what medicine your son and I would love to hear if you guys have a treatment planned lined up


Just a little bit of personal experience, I was diagnosed when I was two years old. I've been on almost every medicine imaginable and I've spent a few days in the hospital here and there. I'm turning 23 in April, I'm in an honors program completing a double major at University and considered myself luckier than most other people my age. By you getting involved in his crohns you are giving him the chances to do the same things as myself. Through proper treatment and being determined to conquer this disease your son can live a very much so normal life.
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Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
03-01-2013, 08:33 PM   #5
lordnate
 
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The last month has been horrible for him. As of today he is currently taking 60mg of prednisone with homes that the inflammation will go down in the next several weeks. He is also taking .125mg of levsin (an anti-spasm) medication. I forgot to mention during this journey the doctors found he has EoE (Eosinophilic Esophagitis) and is taking prilosec and flovent to get that under control. We meet with the doctor on MOnday to discuss this disease and further treatment plan.
03-01-2013, 08:37 PM   #6
Farmwife
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My Grace was just dx with EGE and Colitis. Her Eos disease is every where but her esophagus.

AZMOM has a child with EOE.

Please PM with any questions.
03-01-2013, 08:41 PM   #7
AZMOM
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Lordnate -

Love your heart......

I have a daughter with crohns and a son with EoE. I hate that you have one precious child battling both!

Let us know how we can support you.

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
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-04-2013, 02:14 AM   #8
CarolinAlaska
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Tracey, I'm glad you have come here. You'll be learning a lot in the next few weeks and months and it is really hard on a mom. I'm glad you have a diagnosis now, so you can move forward and hopefully find a solution to your son's problem quickly. We're here if you need anything.
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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.
03-04-2013, 03:29 AM   #9
Sascot
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Hi and welcome! Sorry to hear about your son's diagnosis. This forum is wonderful and so full of information. Our GI is great, but at the beginning never really sat down and discussed anything with us. I learnt most of what I know on here!
03-04-2013, 03:52 AM   #10
Niks
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Hi Lord Nate.

you've come to the right place!! Haven't got much to add from what everyone else has put, but good luck and keep us posted.

Hugs
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
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03-04-2013, 09:19 AM   #11
Lewis,s mum
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Hi just wanted to say welcome and this forum is a god send to me and my family , Its like a good friend there when I need them and I can not speak for ages and take of where we left of lol . My son is 6 but has symptoms since he was 2 my daughter is now having probe and were going down the same route to see if she had crohn s, I found it so useful reading everyone's story as each are so individual the only advice I can give is research and go with your instinct and ask lots of question IBD is such a personal disease everyone has different problems and symptoms and some u can relate to and others u no what to look out for ,xx
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lewis dx age 5

had first peri anal abcess age 2.
fought for his dx for 3 years
disease is located in . his peri anal, rectum colan and small bowel
meds todate are
infliximab 6 weekly
Azathioprine 50 mg daily
omeprazole 40 mg daily
buscopan 30 mg Daily
movicol 5 sachets at present a day
03-04-2013, 11:57 AM   #12
Jmrogers4
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Welcome Tracey, I can only echo what others have said so far. This is a place for information, support, a place to vent even a place for a good laugh. We may be spread across the globe but we all want to to do what's best for our kids and bring them the best and quickest relief we can. It is so different for each child be open to different treatments. Keep a symptom diary. Small intestine disease in my opinion tends to be a little tricky and doesn't seem to have classic symptoms, for many this includes constipation, lack of growth and weight gain.
Keep us posted on how he is doing.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-04-2013, 07:03 PM   #13
lordnate
 
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Thank you everyone! We just got back from visiting with our doctor after receiving the Crohn's diagnosis on Friday. So much to think about. He has 10cm of inflammation in his small intestine. He has been on 60mg of prednisone since Friday and has not seen much relief in pain. Because of these factors our doctor is recommending remicade for him. She has classified his condition to be medium to severe and wants to be very aggressive in treating this. She also recommended 6MP, but feels like he needs more immediate relief due to his pain level. So much information and so much to think about.

I would appreciate any opinions on remicade and or 6 MP. We have another appt next week with a different doctor at Hopkins, since we live in the Baltimore area to get a 2nd opinion.

Thank you!
03-04-2013, 07:18 PM   #14
my little penguin
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My son is 9 and on remicade. He started in the end of Aug.
He has tried all of the other meds but his symptoms did not resolve.
Remicade made a big difference for him and most days you wouldn't know he had crohn's .
He was also on 6-mp for about 8 months but it was not enough .
6-mp takes at least 4 months sometimes longer to work.
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03-04-2013, 08:19 PM   #15
CarolinAlaska
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Thank you everyone! We just got back from visiting with our doctor after receiving the Crohn's diagnosis on Friday. So much to think about. He has 10cm of inflammation in his small intestine. He has been on 60mg of prednisone since Friday and has not seen much relief in pain. Because of these factors our doctor is recommending remicade for him. She has classified his condition to be medium to severe and wants to be very aggressive in treating this. She also recommended 6MP, but feels like he needs more immediate relief due to his pain level. So much information and so much to think about.

I would appreciate any opinions on remicade and or 6 MP. We have another appt next week with a different doctor at Hopkins, since we live in the Baltimore area to get a 2nd opinion.

Thank you!
Wow, that doctor doesn't mess around, if pred doesn't work in 3 days she pulls out the biggest gun! I've heard of that top down method and it sounds like she uses it. I think the second opinion is a good idea in this case. I'm not saying that Remicade isn't the way to go, but since it is such a big deal, I'd want another opinion too.
03-04-2013, 08:46 PM   #16
jmckinley
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Hi and welcome to the forum! I am sorry about your son's diagnosis. As everyone has said, this is a great place for information and support.

Like CarolinAlaska said, sounds like your dr wants to take the top-down approach. Remicade works well for alot of people. Top-down wasn't the way to go when my son was diagnosed, so we did 6mp first. It did take several months to start working, so he was on prednisone that 4 months doing about 2 months at a high dosage and then tapering down slowly. Nasty drug we need but love to hate...prednisone! Once the right dose was in place, 6mp worked great for 2 years for us. The key is getting things under control quickly, so the remicade may be the way to go. I would welcome that second opinion though!

I hope that you get a treatment plan going very soon so that your son will be feeling better. While you're reading up on the disease, treatments, etc...don't get overwhelmed. You'll find that many of the drugs have side effects, but remember that letting the disease go untreated is equally as risky. It is hard to make treatment choices for our kids. You'll find someone on here that has tried everything, just ask!

Hugs to you!
03-04-2013, 10:40 PM   #17
Jmrogers4
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Not sure if this is true or just one GI's opinion but Jack's GI just recently said Remicade works best for small intestine Crohn's. We will be having an MRE soon. It was supposed to be today but had to be postponed. He wants to check for small bowel involvement and he wants him on Remicade if that is the case. He seems to think that is the reason why Jack has not grown or gained any weight for the last several years.
Jack took Imuran for several years which is a similar drug to 6MP and it seemed to control all his symptoms except for growth/weight gain
03-04-2013, 10:45 PM   #18
CarolinAlaska
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Interesting. I'd like to see where your GI got that info. Growth and weight gain are Jae's biggest deficits.
03-04-2013, 10:48 PM   #19
my little penguin
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Those two were DS 's biggest problems prior to dx.
Things went down hill from there .
Current theory was he had alot of stuff going on in the small bowel -
Remicade has helped with growth and weight so ..
03-04-2013, 10:49 PM   #20
Jmrogers4
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^^^ You and me both of course when he said that I just kind of froze and didn't know what to say and it has kind of lingered in the back of my brain. I have it written down on my paper to ask when we have MRE so I will let you know. He seems to be doing so well on LDN that I really don't want to switch and he has gained weight with the EN.
03-04-2013, 11:17 PM   #21
awmom
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Hi Tracey. So sorry to hear about your sons diagnosis. It's a a lot to swallow, and there is so much information out there that it can be overwhelming. You have come to a wonderful forum for info and for support. One thing I have learnt is that what works for some, may not work for others. I'm glad you are getting a second opinion so early on...that should help you decide. I used to be afraid of the top to bottom approach, but I think it might have been a good idea fo my son. Please let us know what they recommend at Hopkins.
03-04-2013, 11:21 PM   #22
Kimberly27
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Welcome. Hugs. The people on this site are amazing. You're in good hands.

Kimberly
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Mom of 17 year old son with Crohn's
2000 mg Pentasa
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Metronidazole (Flagyl), Ciprofloxacin, Levofloxacin, Xifaxin, Zosyn, Augmentin-ES, VSL#3
03-08-2013, 08:45 AM   #23
lordnate
 
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It has been a week on 60mg of Prednisone and no relief, so we are going to have a CT Scan on Monday to make sure nothing else is going on (strictures, etc). We have had the preliminary tests done for 6mp or Remicade. Results should be back next week, so we can start a treatment plan. Our appt at Hopkins is on Friday, so I hope the Doctor will have everything she needs to verify treatment plan or recommend a different that we can start immediately. Very hard to see your son in so much pain. He will have 1 good day and then several bad days.
03-08-2013, 09:01 AM   #24
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I am new also, it is a great place for support. How old is your son? My son's GI team said they don't like to give boys 6mp or Imuran. Not sure why, but they are putting him on Methotrexate??? His jnflammation is lower colon. Have you started a good probiotic? My son is 12 and symptoms began 2010 after battling strep numerous times in a year. He also had too many antibiotics as a baby for ear infections.
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Dx Nov 2011 Colitis/Crohns - March 2013 major inflammation in the sigmoid, descending
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No gluten, red meat, corn, cow milk, or msg
03-08-2013, 09:48 AM   #25
lordnate
 
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My son is taking a probiotic everyday. I am going to pull gluten out of his diet today. I already pulled egg and dairy out. He is on Prednisone (60mg). His crohn's is in the lower part of the small intestine (ileum). We are leaning towards Remicade as a treatment plan. My husband went to the locate Crohn's Support group meeting this week and many of members are on Remicade and said they are doing really well on it. Just anxious to get to Hopkins to get a 2nd opinion next week.

Lord Nate's Mom
03-08-2013, 10:12 AM   #26
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We started at Hopkins and switched to UMMC but now I am ready to go to Childrens in DC and they have a center in Rockville specifically for Crohns/Colitis with Dr Laurie Conklin, highly recommended! Hopkins nor UMMC did enough initially! My son is also on 60mg Prednisone for 2 wks then taper off. The diet helped a lot...do low fiber also and no skins. My son is OK with eggs. Where is your current doctor?
03-08-2013, 12:21 PM   #27
my little penguin
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Look into the list of improve care now for your area.

https://improvecarenow.org/about/who-we-are

Fwiw DS was on 6-mp and the Mtx.
He is doing really well on remicade
As far as pulling food - diet is very hit or miss in children .
It is really better to change one thing at a time.
Not saying in the past few I didn't pull various foods but for my kid
Pulling things didn't really change anything only the right med combo did .

Good luck
03-08-2013, 09:06 PM   #28
Dexky
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Welcome Tracey! Sorry I've missed your story til now! How old is Nate?

I think MLP's advice as to food is spot on. I'm sorry pred hasn't seemed to help so far. I know all the med prospects are very scary. It often seems the GI's are throwing spaghetti against the wall just to see if something sticks! But when something does, you'll be it's biggest fan! Good luck!
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03-11-2013, 02:17 PM   #29
Lewis,s mum
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Hi just wanted to add my son is on infliximab (remicade) and azathioprine he's 6 started just before his 6 th birthday hen had a very bad time and both mess together helped him get back to being a happy boy again , it was a massive decision for us o put him on them and if we hadn't he would of ended u p very poorly , asks lots of questions and researches my best advice , u can olnly do what's right for you and your son, every drug has side effects even paracetamol , hope he starts to feel bettr soon ,
It's horrible seeing your previous baby's hurting , big hugs .x
03-11-2013, 06:04 PM   #30
dannysmom
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Welcome Tracy! Good luck with your appt at Hopkins this week and I hope your son starts to feel better soon.
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