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my son is 2 and has crohn's?

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Crohn's Disease
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Posted 12/21/2009 12:22 AM (GMT 0)
I was just wondering if anyone was willing to talk to me about Crohn's I don't know a whole lot about it except that i had a friend that had it and she was sick alot and her brother died. I am worried cause he is sick all the time and I never know when is the right time to ask questions. Today he has a fever and looks sick but i take him and they don't take his Crohn's into concideration so it is always the same "it's a virus. I have no idea how to be the best mom for him. I feel like no one cares outside of our family and that makes it hard to keep him healthy. I know what your thinking switch doctors well my husband is active duty and I dont have alot of choices. I just need to know what to say and how to make them help him. thanks in advance for any help
Posted 12/21/2009 1:16 AM (GMT 0)
Hi,

First off I would like to say I am sorry your son has Crohn's. It can be a challenging thing to deal with.

Is the Dr you go to a specialist (GI Dr). Those docrors are more informed about Crohn's and could help answer any of your questions.

I have Crohn's myself, but I am an older lady so probably different problems than your son, but would be more than willing to try and answer any specific questions you might have.

Jan

Posted 12/21/2009 1:41 AM (GMT 0)
he has been seeing a gastro dr since he was 3 days old. He sent us to another gastro dr for a 2nd opinion because I thought it was unexceptable for him to tell me after 2 years and all those test that no baby should have to go through that he was not sure what was wrong with my son. The 2nd opinion came from another dr in his office and what she told me was that all test and symptoms point to Crohn's but that they would not put it in his medical record for another few years. they put him on sulfasalazine for awhile and then took him off due to head aches. i guess with all of this said with his crohn's going untreated does he have a higher risk for serious problems later from not being treated sooner.? Also do know if the h1n1 has more of a chance to make him sicker than other kids?
Posted 12/21/2009 4:15 AM (GMT 0)

TJ's Mom - Geez. My daughter is 9 and was just diagnosed with Crohn's within this past year. I can't imagine how frightening it would be if she were EVEN younger. I feel for you, I really do. shakehead

Anyway, my daughter had a lot of fevers too, before we knew what was going on. Almost nightly, and sometimes so bad that she would get the shivers/shakes and cry.  Her first course of treatment was prednisone and pentasa. She got better quickly, but flared up after about 10 weeks of stopping the prednison. She is now on pentasa and entecort and is doing what I would call "decent." Thinner than I would like, but seemingly okay.

I recently started giving her Ensure Plus again...as a dietary supplement to help boost/maintain her weight.  For some reason, she is feeling better since we started that. She only drinks about 1/2 bottle nightly.  Have you tried that for your son? Many here say the vanilla is the best flavor. My daughter has been drinking the milk chocolate.

You may also want to look into an enteral nutrition formula. I have not ordered it for my daughter but know someone who's child has had great success with it very recently. It's called EO28 Splash.  I don't know the website name, but google it and you will find it easily.

Also, do you have your son on probiotics? If not, you might want to consider that as well. They are said to help boost the immune system by fighting off the unwelcome bacteria in one's body to replace it with the good bacteria. There are many many brands of probiotics on the market. (My daughter takes an Align capsule daily. If your child won't swallow them, open it and mix it into some juice with a child's medicine dropper, then squirt it into his mouth. Works like a charm here and Welch's grape juice hides many evil flavors.)

Hope this was helpful.

Posted 12/29/2009 8:31 AM (GMT 0)
Please email me I had crohns just about all my life and the drugs they give are insane, him being 2 might not be able to say, hey these drugs are making me worst or better,
I have been taking 10000 iu a day of vitamin D 3 not the synthetic D . I have been off all my drugs ever since and have not been sick with crohns or a cold flu whatever, Him being a lot smaller than me would have to take a lower dose, 10000 iu a day for me, a lot of doctors that dont study this think its way to high, but if you read about the doctors that study it, its about just right for me.
He might be better than you have ever seen him before.

Do not put your email in your posts, spammers will go wild with it.  Always put it in your profile, then legitimate members can find it if needed.

Post Edited By Moderator (Nanners) : 12/29/2009 8:52:47 AM (GMT-7)

Posted 12/29/2009 8:41 AM (GMT 0)
Hey its me again about vitamin D 3,
if you are worried about giving him vitamin d3 because of overdose, get a vitamin d light box you cant overdoes and you get the exact amount of the vitamin.
If I had the money I would buy you one right now and send it two you, I cant explain how good it works.
I cant stand to see anyone suffer like I did most of all a 2 year old. This is a supplement that I think works better than any other drug out there and you can take it along with the other drugs without problems, you just wont know which is working or not.
Posted 12/29/2009 1:37 PM (GMT 0)
katiesmommy1 on the ostomies board has a 3 year old daughter who has been suffering...dx has just been changed to possible Crohn's...she might be able to offer some suggestions.
Posted 12/29/2009 2:04 PM (GMT 0)
TJ's Mom, Wow! I feel for you! I'm sorry for what you have had to endure. Being in the Military does make it difficult for the best healthcare. I just want to say thank-you for your family serving also!
First of all, I just want to say that even being an adult and having a specialist G.I. here in Minnesota....it seems I still have to FIGHT for my own cause...sota speak! Crohns is an individual disease. If I were you I'd do as much research on diet and nutrition as possible! This web-site will be wonderful for you. With a new diagnosis like this try to give yourself some time to adjust and not get too overhelmed. It took me a good year to wrap my hands around "what" Crohns was going to be like. So, you being a Mom your going to have to look for signs not always words.
I totally agree with ensure thing and would like to mention keeping pedilyte in the house at all times. Just to replace electrolyts when they are low. I know they even make popsicles, which would be a good thing during fevers. Probiodicts are a must! makes a really big difference for me.
Staying away from wheat is good ...
chicken, fish, rice, bananas, rice cereal (chex), mashpotatoes and gravy is always soothing and eggs if he's not allergic. I don't know if you like to cook but making your own soups would be excellent because many in the store have MSG and is a no no for Crohns.
Good Luck and Bless your journey ahead...
Posted 12/29/2009 3:53 PM (GMT 0)
You might also want to check out the dragonpack.com forum. Its for parents of young children with Crohns. Also, it is important with Crohns Disease to ALWAYS be on some kind of maintainence med.  While you are trying to get on with your life the Crohns is always in there still doing its damage on a microscopic level.  Good luck!  

Always remember:

 

4. Use good judgement.  NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs.  Remember that what's right or has worked for one person may not be what's right for you. 

Posted 12/29/2009 11:50 PM (GMT 0)
Nanners, Thanks for that (dragonpack.com). I have never heard of that website, but am Def. going to check it out.
Posted 12/30/2009 3:17 AM (GMT 0)

mthboards said...
get a vitamin d light box you cant overdoes and you get the exact amount of the vitamin.

D is fat soluble. Yes, you can overdose.
Posted 12/30/2009 4:50 AM (GMT 0)
Rider, I believe mthboards was stating that you cannot overdose if you are obtaining your vitamin D3 from the sun or a "light box". That is what I've understood from every article I've read on D3, as well (of course, you can overdose from the supplement). This dermatologist website states it well:

http://dermnetnz.org/systemic/vitamin-d.html

"Sun exposure is unlikely to result in vitamin D toxicity. Other compounds produced in the skin protect the body from synthesizing too much vitamin D during periods of prolonged sun exposure. vitamin D toxicity is likely to occur from overdose of vitamin D supplements. People taking vitamin D supplements should never exceed the recommended dose and should be made aware of the side effects of vitamin D overdose."


Tj's mom, I ditto MoobyDoo's recommendation of probiotics. I am so sorry you and your little one have to deal with this! Yes! We are all willing to talk with you here! You just may get your ear talked off! smilewinkgrin
Posted 12/30/2009 5:03 AM (GMT 0)

Just posted this in the other thread.  More information on D3 and toxicity...

http://www.vitamindcouncil.org/vitaminDToxicity.shtml

Posted 12/30/2009 6:22 PM (GMT 0)
Oh....thanks Emom, I guess I didn't get what a 'light box' is. Would that be the same as a sun tanning station? You're right, I don't think you can overdose on sun! :)

Unfortunately I had a bad experience with a sun tanning booth and can't risk going in them again...
Posted 12/30/2009 6:36 PM (GMT 0)
I am so sorry my 16 yr old daughter is going for first scope she has always had probs since around 2 3 yrs old with bm s......keep us posted and know we are here for you ...lyn
Posted 12/30/2009 7:26 PM (GMT 0)
ugh - military doctors! i went undiagnosed for 3 years under military care. as soon as a saw a civilian gi doc - she diagnosed me with crohns. i would suggest that whenever he is not feeling well with any kind of stomach ailment you go to a gi instead of the regular clinic. it sucks that they won't put crohns in his chart - military docs are always changing and they have no history of crohns to consider.
i think most all crohns pts are on a low fiber diet - have you tried this for him? also - boost and ensure are great nutritional supplements. probiotics can't hurt, either. they even make a culturelle for kids. and always have some pedialyte on hand so he doesn't get dehydrated from diarrhea. do they do regular bloodwork to make sure his iron, Ca, b12, etc are ok?
poor little guy - i hope he starts feeling better soon.
Posted 1/1/2010 3:29 AM (GMT 0)
I have a two year old with very severe Crohn's. The blood started for him at 9 months and we have been through he11 with this disease. The doctors won't want to settle on Crohn's as a definitive diagnosis because he is so young. They keep it as a working diagnosis. Is he on any immunosuppressants? Is there bleeding? If they are giving your son lots of antibiotics than you need to make sure he is getting a good probiotic. Also, from our experience sugar and raw fruit can make things much worse. We have been trying the scd diet for a year and a half and it is hard to tell if it is helping because the disease is so bad all the time for my son. He is on a massive dose of Imuran and has gotten two Remicade infusions so far and still is nowhere near remission.

Crohn's in children this young is rare and it seems like doctors have an extremely hard time diagnosing this problem. The harder it becomes, the more they can retreat because doctors don't like to be stumped or wrong.

It is very tough, especially if you are alone, but you need to keep on the doctors to get all the tests and to see all the specialists you can. You are the only advocate for your son. If he is losing blood you need to get his blood labs done looking for anemia. Also, his esr and c-reactive protein numbers (from blood labs) will really tell you how bad the inflammation is. Also, make sure that they have tested for c-diff, especially if he has spent a lot of time in the hospital. That can cause similar symptoms.

If you get this and want to send me a pm please do. I need to know more about your sons condition, but will try to help you in any way that I can.
Posted 1/1/2010 4:24 PM (GMT 0)
TJ's mom could you get a referral to a civilian pediatric GI thru Champus? I am so sorry to hear your little one suffer so. I too would recommend a low residue/fiber diet. You can get some diet ideas by googling the diet. Good luck and I sure hope you can get your little one feeling better soon. Hugs!
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