5 year old just diagnosed with Crohn's

[Ms_Danielle]

Hey everyone, just joined today. Last month after spending 3 days in the hospital my boyfriend and I learned that our poor and innocent 5 year old son had Crohns disease. Neither of us have any family history of it and we are looking to learn and get some advice . My son is so young I hate the idea of having him take medication for the rest of his life. Any suggestions for natural remedies ? Thanks

Danielle

 

[lizbeth]

Welcome to the forum MsDanielle, I'm truly sorry that your son has received this diagnosis, at the minute you probably fell very overwhelmed and maybe a bit out of control with all that is happening to him. I'm glad you joined us because you can now be part of a very supportive 'family'. We have sub-forums dedicated to parents

http://www.crohnsforum.com/forumdisplay.php?f=49

and also diet, fitness and supplements

http://www.crohnsforum.com/forumdisplay.php?f=17

Have a look at these and you should find out what you are looking for. Also it would be good to post directly into the parents sub-forum as they will be very glad to help you and they have all been there and will appreciate how you feel.

How is your son doing now?

 

[araceli]

Hi Ms Danielle. I am sorry your baby has Crohn's. My kids got sick at 14 years old and I know how hard it is to make the decision about giving them meds. Specially at such young age. And like you, no family history. In here you will find a lot of support and information. there is the parents forum, you may want to check it out. I use some natural remedies along with medication. Hugs for you and your family.

 

[farmerswifey]

Hey Danielle, I"m sorry about your little boy, my son was 9 last year when he was diagnosed, and like you we had no history of it, and it was a complete shock. We are doing okay, this forum is so great for advice, and like you, I decided to find out as much about Crohns as I could, to help my son and our family. Feel free to pm me if you want to chat xo Michelle

 

[my little penguin]

Welcome-
My son was dx at age 7 so I can relate.
AS far as meds for life... well science is always changing and you just go with the best info you have at the time.
some facts to know
The younger the age of dx ( young is considered 15 years old--bTW in the gi world)
typically the more severe the disease course.
Meds are needed to try and reduce the inflammation as fast as possible and keep the inflammation down for as long as possible.
THis gives your child the best chance for keeping the majority of his gut for as long as possible.

SOme "natural " treatments would be EEN -
basically formula only(medical grade - peptamen jr) -no foods for 6- 12 weeks
this is used by some instead of prednisone .
EEN only induces remission - it does not work as maintenance -
most ibd kids need a maintenance drug
some gi's start with pentasa but most consider that equivalent to giving aspirin for a brain tumor ( not going to hurt but definitely not going to help much either)
most start on a pred or een course at the same time as
a 6-mp or Imuran type drug
two reasons for this
pred or een gets down the inflammation
at the same time 6-mp slowly gets into the system( it takes 3-6 months to work)
so by time your child is off the EEN or pred the 6-mp is starting to kick in.
IT is hard at the beginning
take time for your self to grieve
IT took us about a year to come to terms with it.
hugs

 

[Artisan105]

Wow Danielle,

I am sorry you have to go through all of this. I was diagnosed when I was 7 years old. No one in my family had it. Here are some of my suggestions from my experience. First find out what medicine he needs to take from the doctor. Make a journal of his reactions to the medicine. Some might work some might not. Everyone is different so you have to keep a close eye on him. There are many variants of the same medication so you do have options.

Afterwards make a journal of the foods you make for him. Go to the diet section of the forum to try out the menu's people on the forum have already tried. You can get a general census of what helps people and what doesn't. Everyone is different so some foods might hurt him that doesn't hurt other people so try them out.

Purchase some vitamins for him because our body can't absorb certain vitamins properly from food. Getting the liquid form in a gel-cap works great. The solid pills sometimes hurt us or makes us constipated but everyone is different so you have to experiment.

We are all here for you so I hope you can find some comfort in that. Hang in there. Keep us updated. Much love & grace.

 

[jmckinley]

So sorry about your son's diagnosis...and 5 is so young! My son was 12 at diagnosis. It is shocking at first, so take some time to process the information and learn what you can about the disease. The good news is that he can have a very full life even with Crohn's! There are those moments when it flares its ugly head, but there are also times when things are good (notice I did not say "normal"...that word gets redefined!). My son is an honor student in high school and plays in marching, symphonic, and jazz band.

This forum is a great place to get information about anything and everything Crohn's, not to mention tons of support! The medications are scary, but so is the inflammation... that needs to be controlled. I hope that your son gets a treatment plan in place and is feeling great soon.

 

[Artisan105]

 

[polly13]

Hi there my daughter is almost five and was diagnosed at two, I understand and empathise with the heartbreak, worry and emotion that goes with this diagnosis. There are lots of people on here with young children's with crohns and everybody is always ready to share their experiences or just give a virtual hug. So sorry you and your family are going through this difficult time

 

[EthanClark]

Hello-Our son Clark was diagnosed at age 3. He is almost 4 now. We did EEN for 3 months and it worked better than even the doctors expected, however when we pulled him off of it all of the symptoms came rushing back within a week. He just had a G tube put in to resume the feeds as he will need the supplementation for quite some time. As soon as we resumed the EEN all symptoms went away within a week. This therapy works wonderfully for our child, i would recommend at least giving it a try as there are no side effects and your child will be getting all the nutrition they need. Feel free to ask any questions you may have. Good Luck :ghug:

 

[LJS]

Welcome! My son was diagnosed at 5, although it wasn't officially official until he was 6. He just turned 9 a few weeks ago.. he's been on all sorts of meds, none that really work to keep him in remission.. but thankfully he doesn't have many overt symptoms. However, he's just not growing at all..and his inflammation is pretty bad. We just started EN (non-exclusive) a week ago and he is doing GREAT with it.. we are thinking of doing a video for other young kids b/c he's doing so amazingly well with it..he inserts the tube himself every night, and we take it out every morning..so far, so good! I hear you on worrying about the meds..with this horrible disease, you worry about everything.. but just take it a day at a time!

 

[ChampsMom]

Hey Danielle...

So sorry to hear about your little fella, but so glad you found the forum. Tons of good information here, lots to weed through to find what will work best for you and your family... I pray that they find the right course for him quickly...

Some great ideas already given - start a food journal, pain journal, doctors notes/your notes, etc. We were just talking the other day about what the best course of recording all of this information (several options out there), I use a composition journal, some use online apps.

Ask lots of questions -(here and with your doctor, nutritionist, nurses, etc.)

God bless...

 

[Sascot]

Hi and welcome. No extra ideas to add - just wanted to wish you all the best and hope your son gets into remission soon!