Nine year old son Newley diagnosed with crohns

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Tippytoes10
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/1/2018 6:05 AM (GMT -6)   
I’m sorry for bothering the more experienced people here. We could really use suggestions, based on experience.since aug to current our son has lost 20 lbs. has bowel issues, stomach pain etc. he just had a endo, and colonoscopy. Because of “ issues” resulting from the endo , airway issues they were unable to complete the colonoscopy, what they did find in the first three four inches were numerous ulcers.stomach and upper at this time looked fine although I can’t u detstand his stomach discomfort. Our son proceeded to have vomiting on the way home that eventually stipped( no blood) he held down a couple glasses of liquid. In the night he had a temp of 101.4, Dr was called for both vomiting and fever. Luke is scheduled to today for a colonoscopy now under general anesthesia which I am going to cancel and reschedule . They were able to obtain biopsies from the amount of colon they did examine. Luke had propofol , then due to coughing and re? They gave him fentynal with albuturol . All of lukes labs and what his G I. Dr has seen according to the Dr is Crohn’s , he needs to see still he said how far into the bowels it is also wants a mri done in a few weeks. Why so long for treatment and the Dr straight off said he’d like to try hunters due to the malabsorption luke has. This is a lot at once. Why not I v antibiotics? Why must we put him under sedation for the rest of a colonoscopy when they have biopsies and why a mri? Luke was very active , he hardly goes to s hook , he’s exhausted and can’t seem to do old activities basketball, dirt biking, skiing, snowmobiling. Our family has a history of leukemia and colon cancer , humara straight off sounds drastic and severe but I am just a mom so please any help is welcome. Thank you

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1933
   Posted 3/1/2018 8:00 AM (GMT -6)   
Welcome to HW. Don't think for a second that posting here would ever be considering anything even remotely close to a "bother".

I'm very sorry that you're having such a tough time with your son. It's always more difficult with young children. My own Daughter was diagnosed at 13yrs. of age.

It's so tough to be patient because as a parent, you want to get your son feeling better. Unfortunately, the diagnostics are very necessary, and can take time to get done. You really need the colonoscopy, as they will take biopsies, and this is really the only way to confirm a Crohn's diagnosis. An MRE is nothing to worry about all, get it done as well. It's a very concise look, and not invasive at all, so get it done.

The meds can all seem very scary when you first get diagnosed. You will find that in time, they are a lot safer now than your research would have you believe. I'm not trying to suggest that there aren't valid concerns, but this disease left untreated will prove to be way more scary than the meds could ever be.

As for getting your son better, I'm surprised that your GI hasn't prescribed a course of Prednisone. I'm sure that as soon as they can confirm a diagnosis, that this will follow. Prednisone can work very fast to get his symptoms under control. It's good is used infrequently and for 8-12 weeks at most. Many think that Prednisone is safer than the state of the art drugs we have now, but it's actually one of the worst.

I know that as a Mom you're very likely extremely upset. It's so tough to be patient right now, but try to understand that the treatments for Crohn's have improved immensely over the last 10+ years. There are new meds coming out all the time now. Your son has a very good chance at getting things under control, and resuming a very normal life.

Keep posting your questions. There are many experienced people on this forum that will be glad to help. Good luck, hope things improve soon.

Newmommy26
Regular Member


Date Joined Nov 2017
Total Posts : 43
   Posted 3/1/2018 9:42 AM (GMT -6)   
Hi Tippytoes

So sorry to hear your wee one was diagnosed with Crohn’s. It’s hard to stay strong when the disease is diagnosed in our own bodies, let alone in our children. Please never hesitate to come ask questions here. There’s tons of knowledge here that the veterans are happy to share!

I agree with everything monte said. All I would add is that it is extremely important to have an accomplished gastroenterologist who you trust.

I hope all diagnostics are done as quickly as possible and that your son finds realieve. This is the toughest part of the journey to remmision. Fingers crossed for you all.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16423
   Posted 3/1/2018 11:25 AM (GMT -6)   
Hello & welcome to Healing Well. So sorry to read about your son's situation. 73Monte gave you some very wise words of wisdom. I urge you to think about what she has written. As a mother, yes we can get scared when something like this involves our children. This is where you need to educate yourself about this disease & the medications used to treat it. You really need to keep an open mind. Your goal should be to get your son healthy again & crohns in remission. From what you have described at this point, he does not have a mild case of crohns. I urge you to check out CCFA.org & read about crohns & the medications there. It is an excellent site with accurate information. There is a lot of garbage on the internet with useless information.

Keep us posted on how your son is doing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Uniform Charlie
Veteran Member


Date Joined Jul 2015
Total Posts : 705
   Posted 3/3/2018 1:35 PM (GMT -6)   
If you are dead set against humira there are several other non biologic medication options. Also, in children, more so than adults, there are dietary interventions that have been shown to work. The first is enteral nutrition formula. Another avenue is called the specific carbohydrate diet, which is used as a front line treatment by Seattle children's hospital. You can Google these and speak to your son's doctor about them. There are research studies available online.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10555
   Posted 3/4/2018 8:31 AM (GMT -6)   
Firstly, I'm sorry about your son's diagnosis. It's sh!t when a child gets this crappy disease. But also, I just wanted to second Charlie's suggestion of enteral nutrition. With a child, I would try that before I would try steroids. He doesn't need to be on said diet permanently because, let's face it, it's not a whole lot of fun for a child. But it's worth trying for a few weeks/months just to (hopefully) get the immediate flare-up under control.

Again, I understand your doubts about the Humira but it sounds like your boy has severe disease to be honest :-/ For whatever it's worth, Humira is safer than long-term prednisone: a lot, lot safer.

Meanwhile, if you need to convince your GI that enteral nutrition is the way to go, here is an article you can print off to show him.

/www.ncbi.nlm.nih.gov/pmc/articles/PMC4462720/
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)
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