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11-29-2017, 10:23 AM   #1
blessedby3miracles
 
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Location: Houston, TX, Texas

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My Other son has Crohn's now):

To all the moms who wonder if your kid can have Crohn's Disease with little stomach symptoms, my son is one of them. I have focused on Drew for 6yrs with Crohn's and Jaden his older brother has always been healthy. About a year and a half ago he started getting bad anxiety and lost some weight. His appetite was low and he also was not growing. We took him to the Dr who said some boys are just late bloomers which is true in many cases and that anxiety increases during this age. This summer he still had anxiety so we started him on anxiety meds and he gained some weight and I was happy but still had Crohn's in my mind. Towards the end of summer I took him back because he was about to turn 15 and was so tiny only 5ft tall and 90 pounds. Some tests were run for hormone levels, bone scan, and I also said test him for Celiac. His hormone levels were off, he was not where he needed to be for his age but his bone scan was consistent with age. He also had inflammation markers in his blood but not from celiac. We saw a Endo where he had the growth stimulation test done, and also gastro where they ran a Fecal Cal. I suspected Crohn's because of lack of growth but in his brothers case he was anemic and had lots of pain. Jaden had zero anemia or pain. Just tiny, not growing and not a huge appetite. Fast forward hormones were low, so they said there is still a window for Growth Hormones, so we started right away. Gastro numbers from Fecal Cal were high, Dr. did scopes which were normal not one issue except the Illium which was inflamed. MRE was ordered which came back with inflammation and stricturingWe are so sad!! But also okay because now we have some answers why he was not growing. Endo said this could cause lack of growth where Gastro said normally kids have more symptoms but this is atypical. I am just glad we caught it early even though there is already damage. I still can not believe that both my boys have this!! It is defiantly genetic in our case ): Drew is on Humira and MTX and Jaden is onto Remicade starting next week. I have not been here in years but feel encouraged by all your stories, wisdom and knowledge. Hoping for some growth and overall better news for my boys!! This is so hard, but having faith!
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Katie
Blessed mom to 3
Jaden-Chrons 15
Drew-Chrons 13
11-29-2017, 11:27 AM   #2
crohnsinct
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Aw Blessed! I am so sorry that you have to face this all over again. Reading your story gave me a little PTSD. Almost exactly the same. First kid was dramatic and obviously. Second kid brushed off for years...right down to the blaming anxiety and different disease location and behavior.

Concentrate on the good. That you caught it and you know the devil you are facing and there is little learning curve (although different disease locations and behaviors do present some learning).

Just curious. When your first son was dx'd were you given a chance to enroll in the G.E.M. project? It is the Genetics, Environment and Microbial project. They enroll siblings of recently dx'd kids and freeze their stool and run labs etc. Then in the future if/when a sibling is dx'd they pull the results samples and test away to try to find a link/cure etc. Luckily we were and I had to remind our GI of the fact so he could alert the study people.

Thanks also for sharing that seemingly quiet disease could cause real damage. Scary but something we all have to be aware of.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

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
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
11-29-2017, 12:30 PM   #3
Jmrogers4
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So sorry blessed for what it's worth the remicade helped my son's growth tremendously. We always suspected Small Bowel involvement at diagnosis but did not do any imagining to confirm as at the time it would not have changed treatment plan. Fast forward several years and he mirrored your son, no symptoms other than lack of growth/development, his labs were in normal ranges. While going through all the endo stuff we did an MRE which showed massive inflammation in small intestines.
He started remicade in January 2014 at 14 1/2, he was 5'1" and 89 pounds. Now at 18 1/2 he is over 6'1" 147 pounds and MRE in July showed no inflammation!
He gained weight first for the first 6 months then grew a little within a year he had just taken off and his growth velocity was off the chart, followed up with endo at 6 months and 1 year and was agreed he did not need to see him again.
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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
11-29-2017, 12:54 PM   #4
blessedby3miracles
 
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Thank you ladies!! JMRogers thank you for posting those before and after pics. He looks just like my son before, this is encouraging!! My husband is 6ft 3 so Drs new something was up.
Crohn'sinct- no they never told us about any of that but we would be the poster family😂 itís easy to blame myself. Iím like what environmentally did they come in contact with? I would not change them for the world just this disease. Could be worse but ahhh☹️
11-29-2017, 01:05 PM   #5
Maya142
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Sending hugs! I don't have two kids with Crohn's, but both my daughters have a type of juvenile idiopathic arthritis (spondyloarthritis) which is associated with Crohn's. My second daughter should have been diagnosed much earlier but like in your son's case, her symptoms were dismissed as normal kid stuff (sore joints were from playing soccer for example).

The good news is that he has been diagnosed and there isn't such a learning curve since you've already been through this with one kid. Plus, it's like having a built in support group at home .

Really hope he grows and gains quickly! Have you considered supplemental EN to put some weight on him and help with growth? My daughter was very underweight and it REALLY made a huge difference for her - she gained 25 lbs and is now a healthy weight. She even grew half an inch (she was mostly done growing when she was diagnosed with Crohn's) which we didn't expect.
__________________
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
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