HealingWell
Search Close Search
☰

My baby was just diagnosed

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/13/2010 3:18 AM (GMT 0)
My son who will be 5 next month was just diagnosed this week with Crohn's and my family and I are scared. He had a colonoscopy a couple of weeks ago because he had bloody stool on and off for a few months but no other symptoms, our GI was expecting to find a polyp but instead we found Crohn's. We are waiting to get an appointment with a leading specialist for children. In the meantime the doctor that we had originally seen has given him a prescription for Pentasa, we have not started yet because we were waiting to talk to the specialist and he is doing great he has had normal stool and no other problems. Reading the list of side effects looks worse then he is feeling right now. Does anyone have any tips on natural remedies to keep him in good shape until we get more info from the specialist? Thanks
Posted 11/13/2010 3:22 AM (GMT 0)
order the book Breaking the Vicious Cycle by Elaine Gottschall, that's a solid starting point
Posted 11/13/2010 3:27 AM (GMT 0)
I have relied on medicines to keep my crohn's in control, so I don't have any advice to offer. I just wanted to welcome you to HealingWell, and say I'm sorry to hear of someone so young having this disease.
Posted 11/13/2010 3:37 AM (GMT 0)
Since you are interested in natural remedies, the book mentioned by jpnutritionfirst is very good. It describes how to approach the Specific Carbohydrate Diet, intended to help Crohn's patients. You can check out the website, www.breakingtheviciouscycle.info for more info, too. 
Posted 11/13/2010 3:49 AM (GMT 0)
So sorry to hear about your little guy.

Get him on a good multi probiotic for kids and cut out all sugar and processed foods. Udo's has a good toddler's probiotic which I use for my 6 yr. old.

I'm pretty sure Pentasa is pretty harmless compared to other drugs. From what I understand, it doesn't even absorb much systematically, it's like putting cream on his booboo in his intestines. The pill breaks open at just the right spot and coats the intestines.

I second JP, maybe look into the Specific Carbohydrate Diet or the Maker's Diet. I have had some luck with MD, never tried SCD.
Some people have amazing success with these diets.

Hope he gets better fast.
Posted 11/13/2010 1:58 PM (GMT 0)
Sorry to hear about your lil one.
Posted 11/13/2010 4:20 PM (GMT 0)
So sorry to hear about your little one. I personally believe that meds and diet should be considered as complimentary of eachother. Crohns is a chronic and incurable bowel disease and should be treated at all times. He is so little you don't want him to have to start having surgeries etc this young. Its better to keep the disease under control. Pentasa is one of the mildest Crohns meds out there. As for side effects, everything has side effects, have you read the side effects of Tylenol, they would scare you too. I hope he gets feeling better soon. Hugs!
Posted 11/13/2010 4:25 PM (GMT 0)
I'm so sorry 2 hear about your little boy,I hope and pray u find a great doctor 4 him and the meds work 4 him,does it run in your family,,I got another post on here about my 7 month old niece she just had bowel surgery 2 correct a bowel obstruction,,I'll keep praying 4 him best of luck 2 u and your lil guy..
Posted 11/13/2010 7:13 PM (GMT 0)
Thank you for all for your prayers and replies. Crohn's does not run in our families, at least not that we know of. My son is doing great and seems perfectly healthy, this is so new and hard for us to understand it is nice to have someplace to go to ask questions and share thoughts. Thanks again I will look for the book.
Posted 11/13/2010 10:04 PM (GMT 0)
that is horrible, your son will have to be on med's his whole life, but it is not the end of the world, keep it controlled as best you can, via his menu and other things that loving parents do, I was 19  when it started with me, and my parents were devistated, I went from professional althete to near death in 3 months.

Posted 11/14/2010 1:10 AM (GMT 0)
Although the diagnosis is not good, at least you have one. Many people struggle for years with different drs looking for the answer. At least, now you know and you know what to focus on. Instead of searching for what's wrong, you can spend your efforts making him better now. That is the first step to making him better. And the sooner the better! I would definitely focus on diet at this point. Cut out all processed foods and go natural. Its alot of work but its worth it. SCD is an option. And you'll know your doing everything you can. And you have this site that comes with great support! Good luck!
Posted 11/14/2010 1:56 AM (GMT 0)
It breaks my heart to hear of kids being diagnosed... Hearing about a baby is even harder. I agree with Nanners, though. Pentasa is very safe and it's important to get the disease under control quickly.

Do you know where the disease is located? There are rectal meds that can be used too. They are enemas, but they don't act as the otc enemas which are meant to induce a bm. These enemas will contain meds and just stay in your baby - absorbing into the walls. That's another thing that might be easy to administer to a baby. (NOT medical advice, just information for your back pocket)

Best of luck to you and your family. Many people get the disease under control and move on in life. Maintenance meds are almost always necessary, but some people get help from diet. Also, remember those of us on this forum are pretty much the ones who suffer daily. Those who go into remission rarely get online and seek out a forum because they feel fine.
Posted 11/15/2010 4:25 PM (GMT 0)
In addition to this site, you might want to check out the parent's support group at the following web site:

http://www.dragonpack.com/ibdsupport/parents/ 

Posted 11/15/2010 6:48 PM (GMT 0)
I'm so glad 2 hear that your baby boy is doing better and I pray that the Pentsa works 4 him I don't know if I saw u post it or someone else that was my first drug I tried,,everyone is different,,like someone said on the forum here mostly all of us on here suffer daily with symptoms those whom r lucky to go into remission barely post,,but I hope u find all the support u need either from family and friends or us,I'm sure that an question u can think of there is a person on here that knows the answer and likely went through it,,so feel free 2 post anything we r glad 2 help.. tongue
✚ New Topic ✚ Reply