My story..the mom

[kraftymamaK]

My son was diagnosed with CD Nov. 2009 just after he turned 9yrs old. He had bouts with "tummy pains" on and off... they would get worse and then go away, but progressively got worse in 2009. As of 2009... He had over the last year couple years, "just threw up"... for what seemed like no reason. He would maybe get a low fever, or just not feel well from time to time. He would say an occasional "my legs hurt"... and we thought Growing Pains. But he really didn't grow much, not at that time. He had been pretty ON LEVEL before, but did seem to slow at some point. I realized all my friends boys shoes were always bigger, and his little brother, 3 and a half years younger started to catch up... more and more. Regular doctor visits, didn't really show him "behind". But when stomach pains increased and diarrhea became more frequent and he just happen to mention blood in his stools... I knew something was not right.

After blood work showed high inflammation markers, our pedi-gastro doc did the endoscopy/colonoscopy and....welcomed us to the CROHNS CLUB. granulomas were found in stomach and large intestines. Started him on the infamous Prednisone & Pentassa 500 mg 3x a day. After getting off steroids (I don't remember how long the first round was, maybe a couple months by the time tapered off). I think he was done by Christmas 2009. Spring Break 2010 at the beach was not fun for him... with frequent trips to bathroom, cramps and vomiting. He lost a lot of weight.... and went back on Prednisone... for a longer term, but was off it by the time school started in AUG 2010. Doc added azathioprine to his meds, and after playing with dosage, recently came to the conclusion that medication isn't working for him.

Remicade is the next option, and not one we want to have to use. My husband and I did some research, and spoke to the doctor about using strict elemental nutrition to get him into remission. We heard about and read a book, Beat Crohn's! Getting to Remission with Enteral Nutrition and that started our research on this. Which is used in other countries more.... but here in the USA, guess the docs like their drugs. And this is what we are trying now. Liquid diet only.... full elemental nutrition for 6-8 weeks. Our doctor said studies on this are significant and was open to using this.... but most patients are not willing to try. So here we are. We are in the hospital now... starting this. Praying for healing and hoping he will not have to start middle school with a feeding tube. He is doing very well drinking the stuff and I am so proud of him for all he is ready to take on for this. He is awesome!

I am looking forward to hearing all your stories and sharing the results of his, getting good tips and learning more to care for my son.

 

[DustyKat]

Hi KraftymamaK and :welcome:

I'm so sorry to hear about your son but it's good to see you have found your way here.

There are others here that have used an elemental diet to gain remission. My son was on the verge of being prescribed one, well he started one in hospital but it turned out he had a fistula and abscess so it wouldn't have been of much use.

We have a Parents Forum here. Also go the treatment forum and you will find a Remicade Club. Have a browse through the diet forum, you will find threads about elemental diets.

Awww, he certainly does sound amazing! Bless him. I hope he can find peace and relief very soon and with a fab Mum and Dad like he has I know it won't be too far away!

Good luck and welcome aboard.

Dusty. :hug:

 

[muppet]

You're right to be concerned about the Remicade, but the truly terrible reactions are rare. My daughter is still in constant, chronic joint pain years after her last Remicade dose with no diagnosis and no real acknowledgment from the doctors that the Remicade even caused it, but I know it did.

 

[xJillx]

Hi and welcome! I wish your son luck with the elemental nutrition. I hope it puts him in remission, so he can be off to middle school feeling well. Good luck!

 

[Tesscorm]

Hi,

Sorry your son has had such a hard time! My son was diagnosed in May and was put on an enteral diet for 6 weeks. He is now eating all foods and the enteral diet worked very well for him. He just turned 17 so it is probably a little easier for a 17 year old to deal with the restrictions of the diet but, hopefully, your little boy will push through with it! My son was allowed clear liquids (broth, freezies, jello) - if your son starts to have difficulty with the diet, perhaps you can ask your GI if he is allowed just some broth or freezies to help along the way.

I hope the diet works well for your son and he starts to feel better soon!!

 

[Dexky]

Hi MamaK, welcome! Our boys are near the same age, EJ will be 12 in Sept, and nearly dxed the same time, EJ was Dec. 09. We were fortunate that the pred quickly worked for him. I hope the elemental diet works for your son. Please keep us posted!