13 yr old with Crohn's

[Mnmlentini]

My daughter was diagnosed Feb 2015 with crohn's after several months of treating hand, foot, mouth virus and supposedly HSP. Her first symptoms were sores in her mouth, joint pain in her feet/ankles, constantly using bathroom and no energy. These symptoms started in November and was not diagnosed as crohn's until Feb as virus has to work itself out of system and that virus can take months to heal. I was reading, and still am, everything to understand Macy's condition. I suspected it to be Crohn's with everything I was reading but of course waited it out. An endoscopy and colonoscopy was done and verified what I had already suspected. The doctor wanted her on Remicade right away. I refused! I could not see how Remicade should be my first treatment for a 13 year old. I decided to "try" and do it the natural way. Took her off all grains for 30 days, followed GAPS diet, used garden of life products, pumped her up with probiotics, made her suppositories to heal her fistula, and "made" her eat things she would usually never touch. Things were going really well and then she was given Amoxicillin in March for a urinary tract infection. I believe the antibiotics killed everything we were trying to accomplish and her gut had all it's flora wiped out. When Macy got down to 86 lbs she was admitted to All Children's Hospital for 10 days in April. This was due to my resistance to Remicade and the fact that doctor gave me no other choice. How quilty I felt! Call me crazy but I didn't think her first course of treatment should be the last resort. I changed doctors and Macy was put on Prednisone, Asacol, Imuran. I also give her probiotics, curamed turmeric, D3 and Vorvia vitamins. She did get better but her hair never looked healthy and neither did her skin color. It has taken us until now but I finally found a doctor that prescribed her LDN. She started on LDN December 3rd and within a week I thought she was in remission. Her stool was formed for the first time since the supposed virus. She even skipped a day with no stools. We were ecstatic! Once again Macy was prescribed antibiotics (Bactrim DS) for salmonella that was found in her stool. Did the same thing. She started losing weight and was getting fevers during Christmas. But after three scary days she was better. Over Christmas break she was not receiving her third Asacol since school nurse was giving it and we never even thought about it as she was doing so well. When she went back to school she was receiving her third Asacol and within three days she was back to using bathroom an average of four times a day. Hadn't been that bad since start of disease.
My fears are obvious. I am taking the third dose of Asacol away and see if it helps since she was doing really well before going back to school. Macy currently takes 3mg LDN, CURAMED TURMERIC 750mg 2x, FORVIA VITAMIN, PROBIOTICS AND 800mg ASACOL 2x and DIGEST GOLD. At this time we are sticking to our plan and see how things go over the next few weeks. Macy's hair looks healthy, she has gained some weight, has had no side effects to LDN. The only issue at moment is frequency of bowl movements. Stools have remained formed.

 

[ronroush7]

Welcome. I have been told that when I am on an antibiotic to double up on the probiotics that I am taking.

 

[DJW]

Hi and welcome.

We've got a fantastic group of parents here.
Sending you both my support.

 

[my little penguin]

Tagging clash crohnsinct jmrogers tesscom Maya142

Welcome
We do have an active parents section
Here
http://www.crohnsforum.com/forumdisplay.php?f=49


Here is the parents research section
http://www.crohnsforum.com/showthread.php?t=43002


We have all btdt
Ds was dx at 7.
I thought all meds were horrid
Couldn't come to grips with pentasa ( first drug Ds was started on )
Side effects were too scary
The truth is crohns and what it can do in terms of damage silently is way scarier than any med ( including biologics )
Kids get very aggressive disease compared to adults and have far more time to build scar tissue and surgeries plus develop short bowel syndrome etc.,,,

So whatever meds keeps you kiddos guy healthy is key
No parent said please give my kiddo remicade right out the gate unless there situation was grave ( icu etc..)
4 years later my kiddo is on humira and mtx and formula but I am glad to have to options
Not to long ago there was prednisone and surgery and more prednisone

I am glad she is doing well with LDN
Is she still being followed by Gi for bloodwork and imaging and scopes to make sure the disease is under control as well as the symptoms

We have had good luck with probiotics as well ( Vsl#3 prescription strength to avoid flares with abx )

 

[Clash]

Welcome to forum.

I just wanted to say regardless of the treatment regimen you choose the most important thing is regular testing. Lack of symptoms does not mean lack of active disease. My son has been asymptomatic while on meds but still had simmering inflammation. He eventually required surgery. Up until and after surgery while on treatment he had no pain, no blood, no diarrhea or cramping. He was going to school, leading an active social life etc but inside the inflammation was doing irreparable damage.

CD in pediatric patients is usually more progressive and aggressive so it's best to stay on top of it. The percentage of CD patients that require surgery is high(over 50%) and even higher for a second surgery. So it's important to keep pediatric patients' bowels healthy since they have a whole life span while having CD.

Good luck

 

[Jmrogers4]

Welcome,
We've done the battle with antibiotics as well our standard protocol anytime they are prescribed now is antibiotic, 2 hours later probiotic his GI said to just get the cheap ones as most of it would be killed off by antibiotics but that hopefully enough would remain to keep things stable.
My son was on LDN for a couple of years and he appeared to do pretty well on it but he developed cellulitis from a bug bite and antibiotics led to c-diff infection and just was not getting any better from there. An MRE showed massive inflammation through the small intestine at that time and at the TI however, previous inflammation through large intestine was not present. We are now assuming that simmering inflammation was present all along judging by his health now vs then.
He maintained his grades, participated in activities and generally led a normal life but didn't realize he didn't feel 100% until he actually did if you know what I mean. He had been feeling a certain way for so long that it was normal for him. It was not until he was on Remicade that we achieved remission. I'm not saying that you need to do Remicade but when your child is out living a normal life and does not even think about his disease it makes the drug seem like a miracle.
My guilt is from not going there sooner but you keep thinking they are almost there and if I just do one little thing different then I can keep doing what we are doing. I could have saved him from several years of not thriving not only physically but also mentally.
Good luck and keep us posted