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Crohns parent 4 years

Wow it's been 4 years since my daughter 12, has been diagnosed with Crohn's. Sometime I try to pretend its not there, but this terrible disease is always there. I feel we live one day at a time we never know how she is going to feel. Shes a Gemini stress ball I love her so much as so many of you are going through the same thing I wish it would go away

My daughter had diarrhea and stomach pains summer of 2009 on vacation. Well the diarrhea didn't go away. We then went to Ped GI and Julianna had her first colonoscopy and endoscope. The doctor said colitis. Told us to start by adding probiotic vsl#3, broswellia and rice powder. And a new diet gluten and diary free. Well the next visit we started asacol and mp3. After a few weeks my daughter had a 104 fever for 5 days, after no response from her doctor I brought her to the emergency room they gave her iv antibiotics and said she was allergic to the medicine. After the doctor took a few days to respond I was done with her.

The next doctor we went was in the grassland Westchester, she said my daughter had crohn's colits. Now that is a huge difference from what the original doctor had told us. My heart was broken for my sweet young daughter. She told us she can have gluten and dairy and we tried pentasa. She also wanted my daughter to take mp3 again, but after reading the side effects that was not something we wanted to try. Again Julianna had a terrible side effect to this drug. Everyone you know what the famous drug they always push remicade. I can't do it I told her, so she replyed well then I can no longer treat Julianna.

I had enough of all these drugs, And I was not sure what my daughter had after over a year going to these doctors. I decided to go natropath.


Weve been to a few Natropath in the Hudson Valley, but there over priced and I'm not sure if there very good. For a whole year my daughter and I didn't eat gluten or wheat everything oraganic nothing out of a box and Julianna did very well. Adjusted by a chiraproctor onece a week and accupunctor treatments weekly. She was doing really well. But she was stressed many times when partys came and so on ( the food situation). Well the natropath told us we still needed to have a Ped gastr just in cause Julianna ever needed to be put in the hospital. Also doctor recommended for us to get a water test the house rental had ecoli and coliform in the water. I'm not sure if this was the cause but I believe it is part of it, she also was on antiobictic many times when she was a baby for ear infection. Aso my daughter is half Jewish, and they say Jewish have a high percentage rate of getting crohns from MAP in Cow milk.

So I found one she suppose to be nice and not one of the pushy doctors, but I was wrong. Julianna crp was down to a 14 that was really good no stomach pains ect. Well the doctor wanted to give julianna a colonoscopy and endo and it came back moderate crohns colitis polups granolums and one large ulcer, she said she needed to be on remicade it's the wonder drug. Sure its the wonder drug now, but what about when my daughter grows up and has worse problems and cant have kids and your no longer her doctor because she will be an adult you don't see all the problems these children face latter in life. Once again the doctor would no longer treat julianna unless remicade

Now weve been seen by Julianna pediactric md that also studies holistic meds. IT's been a tough year and a half. She been taking LDN for over a year and takes Predisone once in while when things get real tough. She never 100 percent. We tried pentasa again. It gave her real stomach pains again. I spoke to her doctor and he said maybe we should start thinking about infusion drugs.

Here we are again I try to remember what worked and what didn't.

Julianna currently taking
4 mg of LDN
krill oil
probiotic mindlinx
glutamine 6 grams
wobezyme 6 every morning
sam-e 400 mg for anxiety
reshi mushroom or slippery elm go back and fourth
Current diet grass fed meet organic fruits and veggies gluten and dairy free

tried carnivora dmso vsl #3 colostrum flower water (bach flower) msm aloe
digestive papaya enzyme pentesa Asacol mp3 predisone antiobiotic for fistulas
Past diets scd diet
 
Welcome to the forum. There is a Parents Forum(<--click here) that has knowledgeable, compassionate, members there are always there to lend an ear.

The decisions we have to make for our kids in relation to this disease are always difficult ones. My son was dx'ed last year at 15 and we went straight to remicade since his CD was deemed severe. He has since had the remicade schedule tweaked and the dose upped and we added methotrexate at the end of last year.

The remicade worked immediately and he was experiencing no symptoms but he couldn't last the full length of the time between infusions. Since our tweaks and additions he has regained his normal life and is a constantly on the go teen. His last fecal calprotectin was 48 and we were thrilled!

I thought the GI might start lowering doses or extending the schedule out but since the goal is full mucosal healing in an effort to halt severe damage being done to the bowels we are still at the same dosages and schedules.

There is also a Diet Forum(<--click here) and a few parents treat with diet alone, you may find some great info in there.

I'm going to tag Jmrogers4, her son is on LDN as well and has gotten fantastic results with it including a clear scope. I know there are a couple more kids on LDN but at the moment their names escape me.

I hope your daughter is able to find remission soon! Sending hugs your way, it is so excruciating to watch our children have to battle this insidious disease.
 
Thank you for taking the time and sending your thoughts my way I will check out the info you sent. I think this site is going to help my daughter and I feel more connected to people that are just like us.
 
Clash is correct. Today is my son's 1 year anniversary on LDN. We had scopes done at 8 months on LDN and scopes were clear only pink healthy tissue, compared to last scopes with lots of ulcerations, swelling in TI, duodemum, colon.
We have an appt next week with his GI for a check up where we will do Fecal calprotectin and bloods to check for inflammation and vitamin levels.
He takes 4.5mg/night. We are quite diligent about the timing of taking his med and he takes it at 9pm every night since it works with your sleep/endorphin cycle. We are also very careful about where/how it is compounded and make sure it is quick release and never older than 90 days.

Jack took Pentasa for a short time while on LDN but we found it did not make a difference one way or the other. He takes a multi-vitamin, Vitamin D and an appetite enhancer.

I hope the LDN works for a long time for him and I do not have to make a decision about biologics but then I worry about the LDN sometimes as well as there has not been any studies done on long term use in pediatrics so it is a risk vs. benefit argument it seems all medicines have some risks but then so does uncontrolled Crohn's. None of these decisions are easy and how I wish there was a crystal ball that would allow us to see into the future and pick the best medicine for them.

I hope your daughter reaches that magical remission soon. Keep us posted on how she and you are doing and as Clash says definitely check out the parent section
 
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