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Crohn's Disease Forum » Your Story » New to the forum. Mom of two kids with Crohn's


11-12-2015, 12:40 AM   #1
Gi-jo-mom
 
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New to the forum. Mom of two kids with Crohn's

Uugh! It's a long story but here goes. Back in the month of March this year, my 14 year old son started to complain of a sharp pain in his peri-anal area. My husband and i thought that it might be a hemmoroid and decided to just "wait and see". About 3 weeks later my son told us that the pain was getting worse and there was some swelling in the area. Much to my son's demise, my husband examined the area and after searching the internet, we came to the conclusion that it was an abscess which turned out to be very large. We took him to the doc and had the abscess drained and were told that we needed to pack the wound every night, which is an absolute nightmare. He was in so much pain. And if i showed you a picture of the hole that was left in my son's netherregions it would bring tears to your eyes. Anyways, about a month after that he got another abscess on the opposite side of his anus. The doctors said that it is not normal for anyone to get two abscesses within one month of each other and referred us to a pediatric GI doc to "rule out" Crohn's disease. We were floored at first but then we just assumed that this was something the doctors had to do to cover all the bases. We went to see the GI doc assuming he would tell us to go back home because there is no way this boy has Crohn's. Well, that's not at all how it went. To make a long story short, he was diagnosed with fistulizing Crohn's disease in July after an MRI and of course the colonoscopy and endoscopy. He underwent surgery to have a seton placed into both fistulas and the doctor started him on Humira. All is well in the household, or so we thought. (Deep breathe) One fine day, at the end of August, just one month after my son's diagnosis, my 18 year old daughter and i were driving home from a wedding, when she suddenly broke down crying saying that she has had a sharp pain in her bottom for a couple of weeks and she thinks it might be an abscess just like her brother's . What do you know, that's exactly what it was. Now we didn't want to jump to conclusions but, seriously, what are the chances?! So, ya she went through all the same tests as my son and about 1 week ago was diagnosed with Crohn's disease. Turns out, she's had symptoms for about 2 years. We thought it was IBS. Oh how wrong we were. The doctor says that it's very aggressive and wants to start her on Remicadee. Now we are waiting for the prior auth to come through and she will hopefully get started with infusions on a couple of weeks. My son just started high school and because of the Crohn's, he looks like he should be in 7th grade. Thankfully the Humira is working very well and he's finally gaining weight and adding some inches. My daughter just graduated from high school in May and started college full time. Tough start to her adult life but she's a trooper and has a positive attitude about everything. Well, there it is. My story. Sorry it's so long but thanks for reading. God Bless.
11-12-2015, 12:50 AM   #2
Momoftwo
 
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Oh my, I'm so sorry. Both kids is just so hard. I know our GI keeps telling me to keep eye on son 14, just found out so e anemic issues. Daughter 16 dx a year ago, issues since she was 6. Dr said hers was never tell tale signs of crohns, but her granny and aunt (husbands side) both had in large colon. Daughters us terminal ileum, humira 40 two injections down, take bi weekly, after almost a year on 20mg.
11-12-2015, 01:08 AM   #3
POTTYTIME!
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Im sorry for you/your children's DX. I cant image this horrible disease in a child. Im a grown man and have a hard time with it. Keep your head up. Hopefully they get the meds they need. Its crazy you pay out the anus for insurance and then have to wait to see if they decide to pay for meds you need.
11-12-2015, 01:24 AM   #4
ronroush7
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Sorry for what you and your family are going through.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-17-2015, 10:51 AM   #5
zmama
 
Join Date: Nov 2015
My 13 year old daughter was just diagnosed. My pediatrician is sending our youngest daughter, 10, to a GI b/c of some of her symptoms and inflammation in her blood work. I just spoke to the GI who did my oldest daughter's colonoscopy & endoscopy and she did say if autoimmune disease is found in one person in your family, others are at a higher risk. So sorry to hear about this, GI-jo-mom
11-17-2015, 04:54 PM   #6
Jmrogers4
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Sorry, there are several parents who have more than one child with crohn's be sure to check out the parents of kids with IBD section.
Does your son see the Pediatric GI's out of St. Lukes? They are the only ones I know of in the area.
My son was diagnosed at 10 years old and started on remicade at 14. It was his turning point for getting the disease under control and starting to grow. We had the same issue with our son looking several years younger at 14 he could pass for 10-12 years old. He was 5'1" and 89 pounds when he started on Remicade in Jan. 2014. He is now about 5'10 1/2" and varies between 122 -130 pounds.
That being said the growth was not immediate by 6 months in he grew a couple of inches another 6 months another couple of inches and then he just took off. I think he went through about 3 years of puberty in one year.
Please keep us posted
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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
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